Finished the treatments on Wednesday, 10 October. Spent an extra day in Portland just incase of side effects. Everything went well and I'm feeling pretty good.

 

Was visitied by my old Master Chief and a very good friend. They were checking up on me and seeing if I needed anything.

 

On the was home today at about 1300 and should be in the safety of my own home by about 1600.  Looking forward to that.

 

Had the 3rd treatment on Friday. Had a good night that evening but developed high fever and naseua on Saturday.  Pretty much stayed in bed.

 

Went on tour of wilderness areas with Virginia today.  Oregon is very beautiful, especially the Colombia Gorge area. Started feeling ill when we got back. Same thing.

 

Have 4th treatment tomorrow instead of Tuesday. I'll let the Oncologist know about side effects.

 

Another entry tomorrow or Tuesday.

Had second treatment on the 3rd of October.  The treatment went well but had a little difficulty on the 4th.  Developed a fever, upset stomach and some limited pain. 

 

Everthing is well today and I will be going in for 3rd treatment this afternoon.

Well, we got to Portland, Oregon yesterday (10/01/07) and started the Stereotactic Body Radiation Thereapy (SBRT) in the afternoon.  Everything went well and I am feeling good.  I will repeat the procedure tomorrow (10/3/07) and Friday (10/05/07) for this week and will do it again on Tuesday and Thrusday of next week.

 

I will keep everyone in formed.

OK, back from Portland on the 19th.  Needed a day or two to rest. To much flying.  The mold is made and started the wait for radiation treatment.  The wait wasn't long.  Got the call today for scheduled appointments.

 

I will travel again to Portland on either the 30th of Sept or the very early morning hours of the 1st of Oct.  Appointments are all at 1515 on the 1st, 3rd, 5th, 9th and 11th.  Should fly back home on the 12th.  Let's all pray that this works and I can get back on the list. 

 

OK, so I’m a liar. But I do have a fairly good excuse.  Since my last posting I have undergone several different procedures in an effort to get the transplant.  In August I went to Portland and in September I returned.

 

The August trip was so the transplant team could do a more definitive CT Scan. This scan showed continued growth of the tumors. It was determined that the RFA’s were not effective and the radiologists in Portland felt that I would benefit from a Chemotherapy Embolism.

 

This is a therapy treatment by which a catheter is threaded up the femoral artery into on of the major veins of the liver.  The catheter is slowly threaded to the tumor site and a massive amount of a very toxic chemotherapy drug is injected. The procedure takes about an hour to complete.  Mine took four hours. This was followed by another CT Scan.

 

The scan showed continued growth of the primary tumor and development of another tumor.

 

It is at this point that many transplant teams declare the situation inoperable and remove the patient from the transplant list. However, the University of Oregon has a new procedure called Stereotactic Body Radiation Therapy or SBRT. “Radiation therapy is the treatment of cancer using high levels of X-ray energy that can be delivered to tumors with customized treatments created for each patient. Stereotactic radiation therapy that utilizes 3-D imaging and gamma ray treatments has been successfully used for brain treatments for several decades and over 5,000 brain treatments have been delivered at UVA alone. 

 

With this new application, SBRT, similar principles apply. Patients can have small tumors accurately identified and located within their body with precise coordinates. Using computerized planning, doctors can deliver high-energy x-ray beams precisely to the tumor targets though out the body.” The radiation oncologist feels that he can completely eradicate the tumors that are present and get me eligible for the transplant list again.  We will be starting this procedure on 18 September 2007.  At that time I will try to keep everyone updated as to my progress.

 

For those that wish to read about SBRT go to this web site:

 

http://www.healthsystem.virginia.edu/internet/news/archives07/SBRT.cfm .

 

Well, it’s been quite a while since my last update.  There are several reasons, but the main reason is pure laziness.  OK, let’s get started.

Had my first RFA in April 2007.  It went fairly well.  In order for the radiologist to get to the tumor he needed to create a pneumothorax.  It was not pleasant and was fairly painful.  I had problems with deep breathing, but the problem and pain subsided after about two weeks.

Unfortunately the radiologist did not get the entire tumor, so in May 2007 they performed another RFA.  This went much better but I have yet to be scheduled another CT scan so I don’t know the results yet.

I am feeling very good and I am in no pain.  I will let you know when and the results of the next CT scan.

Thanks for all your emails and calls.  I promise to do better on keeping this updated.

Well, it appears that I am still at the mercy of physicians. The interventional radiologist who is to do my upcoming RFA will be on vacation the first week of April. So, to accommodate his schedule I will be doing my pro-operative interview tomorrow 3/28/07 and have the procedure the morning of 3/30/07.

This is not an outpatient procedure as I had thought. I will spend at least one night in the hospital, with a discharge date of 04/01/07 (great day) or 04/02/07.

I promise to keep everyone appraised of the situation and expect to update the blog as soon as I get back from the pre-op interview.

Had an appointment with Dr. Morgan on Monday, March 22, 2007.  At that time the AFP (alpha-fetoprotein – a liver cancer marker) was extremely high.  Here are the results from previous tests: 

09/19/2006    115.9 (High)

12/19/2006    296.6 (High)

02/12/2007    589.9 (High)

03/20/2007    2323.9 (High)  

As of March 22, 2007 we are still waiting for Portland VA to determine if I am eligible for a transplant.  They are concerned with the size of the tumor and the fact that I smoked cigars. 

This has prompted a new course of action that may be a local curative to the Hepatic Carcinoma Cancer (HCC).  We will attempt Radiofrequency Ablation (RFA) therapy.  This is an invasive treatment in which “dielectric heating caused by radiofrequency waves in the region around the electrode inserted in a lesion fully coagulates and necrotizes liver tumors. 

RFA uses an expandable or cool-tip electrode needle, and single coagulation is able to necrotize a total area of about 3 cm. Accordingly, curative ablation for a tumor measuring 2.5 cm or less can be completed with a single treatment session. The current indications are three or fewer tumors measuring 3 cm or less, or a solitary tumor with a major axis of 5 cm or less. However, there is no clear evidence whether curative ablation can be obtained for hypervascular hepatocellular carcinoma larger than 3 cm. Because local occlusion of hepatic blood flow, using a balloon or transcatheter arterial embolization (TAE), increases the coagulated area in RFA, this combination has been favorably used”.

(The above is quoted from the Journal of Gastroenterology, 2004)

 I have a pre-operative consult on April 02, 2007 at which time final determination of the size of the tumor and ultimate therapeutic care will be determined. 

Stay tuned, things look like they are finally moving forward.

Again, I am late in doing my posting. What can I say, I’m old and lazy.

Since the MRI was inconclusive I had another CT done a week later. This also proved to be fairly inconclusive. Seems the shunt is getting in the way of all the pictures. There was one problem and that was probably due to having such large amounts of contrast close together.  My feet swelled to look like “hobbit” feet.  It was painful and I was unable to really get around for a few days.

Got word today (02/27/07) that my case has been reviewed here in the VA Long Beach and my films and paperwork is being submitted to the VA Portland.  Hopefully we will get some feed back from them shortly.

That’s about it for now. All we can do is sit and wait.

I apologize for not keeping up with this but I have been waiting for the results of the MRI.  

Had the MRI on 01/31/07 and just today 02/07/07 got the “results”.  Here is what the radiologist had to say: “Because of technical limitations, the masses are not as well marginated as on CT, so they appear to be one ill-defined area which measures between 2 and 3 cm.”  

Now I am no physician (regardless what my Marines say) but I read this to say that they can only see one mass 2 – 3 cm in size. The “technical limitations” he mentions is the shunt placed internally when I had the Porto-Caval Shunt procedure back in 1998.  

I have asked Dr. Morgan to determine what the next step will be, but I feel strongly that a follow-up CT is in order to determine the possible growth of the mass(es).  

As for the Echocardiogram, that came out just fine. For now I am just waiting for the Pulmonary Function Test (PFT).

Had the MRI this morning and everything went well. I was told that the films would for forwarded to the VA this afternoon with next day delivery, so hopefully the Radiologist will be able to read them tomorrow. Now I go for the Echocardiogram, tomorrow, and a Pulmonary Function Test on the 12^th.

As soon as I hear from Dr. Morgan I will post the results of the MRI.

It’s been a few days, but they’ve been very fulfilling days.

I finally got a date for the MRI.  It is scheduled for January 31, 2007 and will be done at a private MRI facility in Tustin, CA. It is scheduled for 9:00 am, another “nothing to eat after midnight until afterwards” examination.

Got an email from my Dr. Morgan telling me that the Nuclear Stress test was good and that things are on track for the transplant.

I have been getting a lot of emails from friends and family (due to the mass email I sent). It really does my heart good to know so many have my “six”. Many are at a loss, not knowing what they can do. I’ll be honest, there really isn’t much. Just email me occasionally and keep my wife and two step-daughters in your prayers. Those three are the most important women (other than my mom) in my life and I do worry about their well-being.

Well, it’s late (early, your own perspective) so I’m signing off for now. I’ll post more latter.

Went for the Nuclear Medicine stress test yesterday. Of course they wouldn’t tell me anything other than to talk with my Dr. I was up at 4:00 am and on the road to the Long Beach, CA VA Hospital at 5:00 am. Traffic was a bear and I got there 15 minutes late. They took their time and at about 8:30 am I got the indwelling catheter inserted and was injected with the nuclear contrast. About another half an hour later they did the scan with my heart at rest. The tech let me look at the pictures (pretty fantastic) but would say nothing about it.

Then the wait started. At about 10:00 am they did a baseline ECG and injected me with the stressing agent. Got an immediate pounding headache, but nothing more. Then more waiting. About 45 min later went back for another scan with my heart stressing. I wanted to look at the pictures but my head was pounding so bad I just left. It’s a good thing Virginia came along with me as I was totally unable to drive.

When I got home I went immediately to bed and slept for about 4 hours. The headache was still there when I awoke and stayed with me until I went to bed at midnight.

Overall, not a fun experience.

Still waiting for the MRI to be scheduled and found out that the Nurse Practitioner who is the transplant coordinator will be out of the office for the week. I find it amazing that my Dr. puts such emphasis on this test, yet the VA is slow in scheduling it. I guess that’s the price you for serving your country.

Next is the Echocardiogram on the 1^st of February. Onward and upward.

Notified by the VA Long Beach of additional tests necessary for the transplant.

 

On January 22 I will get a Thallium Stress test.  The American Heart Association describes this test in the following manner: 

I received a telephone call from the MRI office at the VA.  They wanted to schedule the MRI.  When I told them that I needed an Open MRI they told me that they could not do it.  I told them that I was aware of this and that I was requesting an Open MRI be approved.  They then informed me that they had nothing to do with Open MRI's and that I would have to contact another office (Fee Basis) if I still wanted the MRI.

 

I then received another call from the Echo office.  Seems I now need an Echo Cardiogram.  This has been scheduled for 02/01/07.  I will update at that time, if not sooner.

It has been a week now and I haven’t heard from the VA about the MRI.  I have spoken with my Dr. and now he also wants a full body scan and MRI (to be done after the Abdominal MRI).  We’ll just have to wait and see what they do.

The Road to My Transplant

My personal journal of my journey towards receiving a new liver.

 01 January 2007

 I’m starting this journal today but the story really begins several years back.  In 1995 I was diagnosed with Hepatitis C (HCV).  I was started on Interferon in its many forms but proved to be a treatment failure each time.  During this time frame I also developed Insulin-dependent Diabetes, was diagnosed with Post Traumatic Stress Disorder and several other non-related ailments.  I spent most of 1996 to 2002 fighting the Veterans Administration (VA) for a 100% disability rating.  I also, in 2006, applied for and was granted full disability by the State of California and the Social Security Office.

In December of 1998 I developed ascites and began bleeding into my abdomen.  This was caused by esophageal varices and required that I undergo an immediate portal caval shunt.  This, along with the determination that 70% of my liver was cirrhotic, pushed my Primary Care Physician and Hepatologist, Dr. Timothy Morgan, of the VA Long Beach Healthcare System (VALBHS) to have me evaluated for a liver transplant.  I was placed on the list in 1999 and have been waiting since then.

On December 22, 2006, after having a Computed Tomography (CT) Scan completed on that same date, I was informed by Dr. Morgan that the CT Scan showed two lesions, 1.4 cm and .9 mm in size.  This, together with increasingly elevated

Men and nonpregnant women:	0–6.4 international units per milliliter (IU/mL)
	0–20 nanograms per milliliter (ng/mL)
	0–20 micrograms per liter (µg/L)

Alpha-Fetoprotein (AFP) results, confirmed in his mind that I indeed had developed Hepatic Carcinoma (Cancer).  At the time of writing this journal my AFP is over 300 IU/mL.  His plan of action is to get me moved up on the transplant list at the Portland VA Medical Center.  To accomplish this he has requested that I give up two of my remaining few vices, smoking cigars and smoking marijuana.  Now I wouldn’t really call smoking marijuana as a vice as much as a means to reduce the pain in my body.  But, as much as our wonderful federal government has determined that it must protect us from ourselves, my only successful pain management program must be dropped in order to receive a new liver.  Smoking, as is the usual case is our magnificent medical community just won’t let up on making us all smoke free.  So, I must prove to Portland that I am both nicotine and “drug” free for a period of 6 months and must remain so until after the transplant.

Let’s talk about pain.  As of this writing I am experiencing pain in my right elbow, both shoulders, both hips and my left knee.  I have no idea what is causing this pain.  It is my hope that it is not cancer that has metastasized from the liver.  Regardless, at this point the only pain management available to me is Acetaminophen (Tylenol) and it is not even touching the pain.  It is my hope that Dr. Morgan can and will prescribe some type of pain medication.  I can only keep my fingers crossed.

Well, that’s enough for the moment.  I will add additional information as it occurs.  I am presently awaiting an MRI (which in my opinion is useless as the CT Scan has already shown the lesions).  As I have developed claustrophobia this must be done in an Open MRI facility as the VALBHS MRI unit cannot administer any type of IV medication.  Once this has been scheduled and completed, or if something new arises, I will add to this journal.