Thanksgiving 2012

Thanksgiving Day is the day set aside to attend to the things we appreciate in our lives; however, normally for me it is just a day to get together with family and/or friends, to visit, and to share a special meal. This Thanksgiving meal was different, however, and made me really appreciate the time with family and friends.

We were joined at our table this year by a woman and her daughter and son-in-law who lost their husband/dad to malignant melanoma last April. When I was first diagnosed with mesothelioma in 2010, I reviewed the survival data and thought I had no more than a year to live. Subsequently, I believed that I probably had a rolling six-month life expectancy because the doctors would not give an estimate of how long I might live. Over the intervening two and a half years I have come to expect a longer life span and have begun to take it for granted; however, having these guests at our table made especially appreciative of the meal because their husband/father was unable to be with his family for the day, and he will never know his grandson who will be born next May.

Reflecting on these sad facts made me appreciate my doctors at Scott and White and the University of Colorado hospital—Doctors Smythe and Reznik who did a tremendous job of removing my original tumors, Dr. Gowan who got me started on chemotherapy, and Doctors Camidge and Weickhardt who have stayed on top of my case for the past year and a half in Denver. I also greatly appreciate the many highly professional, compassionate, upbeat, and kind nurses at both hospitals who have given me tremendous respect for these often undervalued caregivers. In fact, everyone I’ve met at these two hospitals deserves praise for their competence and professionalism.

Obviously, I am extremely thankful for he support of Jana, our daughters and their families, and my mother-in-law. But I’m perhaps most thankful for the fact that the girls have given us grandchildren. Here’s why. There is no real difference between the mind and the body, but it is a useful fiction to think as if there is. I believe the mental stress of my latter years in DoDDS and my retirement played a role in the development of my mesothelioma. It might have eventually developed, but I believe stress probably facilitated the transformation of those asbestos-tainted cells into mesothelioma.

Jana’s and my diagnoses and my subsequent treatment have certainly been stressful and might have hastened the further development of my disease, but the stresses may not be as great as one might expect. I have never viewed my disease as a tragedy, a great disappointment, yes, but not a tragedy. The reason is that by that point in my life I had accomplished what I saw as the major responsibilities of a husband and father—our daughters were grown and had a good education, they were married to outstanding young men, and Jana and I had sufficient financial resources to expect to live a reasonably comfortable life for many years. So while it is a tragedy when a child or young adult has an incurable cancer, it is not so stressful when ones life is in good order and nearing an end anyway.

So while our cancers have been stressful, the conditions of our lives have offset that stress at least so some degree and, I believe, contributed to a longer life span than I had expected. However, there is one other factor that I believe has contributed even more to my life span, and that is grandchildren. The stress-reducing peace and joy my grandchildren bring to my life must be therapeutic. They provide an enhanced motivation to live, so whatever good the doctors and nurses have done for my body, I believe Jamie and Madeline have done equally as much or more good for my health. At some time in the indeterminate future, I will slip away, but until that time, I believe my love for them and the joy I have in seeing them will work to prolong my life. For that I am extremely grateful and at the same time saddened that our guests’ husband/father did not get to know his future grandchildren and benefit from the support they unwittingly provide.

Out with the Old and in with the New

It’s been some time since I last wrote an entry because things have become rather routine and predictable.  Today, however, that changed a little.  Before I had my first round of chemo two years ago this month, I had a port installed on the left side of my chest.  The port is a small device with a tube that runs to a major vein.  It has a rubber top, and a special needle is used to penetrate the overlying skin and penetrate the top of the port.  Then blood can be withdrawn and other fluids such a chemo drugs can be injected into the vein through the port.  Two infusions ago, my old port did not work properly.  Flushes and/or chemo drugs would flow into the vein, but blood could not be drawn.  The most likely reason was that a fibrin sheath had formed over the tip of the tubing inside the vein.  The sheath acted like a one-way valve that opened when fluid was injected, but closed under suction.  Then during the last infusion two weeks ago, there was significant resistance to the injection of fluids, so they had to infuse my chemo through an IV in my arm.

 
Consequently, I had to go in today and have my old port removed and a new one installed.  It all went very smoothly, and it was interesting because I was awake but sedated and very relaxed while the nurse practitioner performed the procedures.  I’m glad to have my new port because it is a power port, which allows contrast medium to be injected when I have a CT scan.  My old port was small and had not been approved for the injection of the CT contrast.  Given that I have a CT scan every eight or nine weeks, the new port will save me from having future IVs.  I’m a little sore at the two incision sites, but Tylenol helps.  My new port will get its first test on Monday when I go in for my next CT.  Wednesday I’ll learn if my tumors are behaving themselves or not.  If not we’ll have to come up with a new game plan; otherwise, I’ll go into another three-round cycle of pemetrexed, which will take me into the new year.

David

Back in the Saddle Again

Well, I’m back in the saddle again,
A new round of chemo begins.

Had a CT on Monday and saw the oncologists today. Enough growth has occurred in a couple of areas that a new series of chemo with pemetrexed is needed. The previous series of infusions lasted for about four months, and then I had the four month break. I’ll go through three rounds of chemo which last three week each, and then I’ll have a scan, and we’ll see where things stand. They said the typical pattern is to continue with the pemetrexed indefinitely, but there is no good clinical research to show that that approach is better than my pattern of getting chemo, having a break, and starting again. If growth is stabilized after a few months, then maybe I’ll have another break; we’ll just have to wait and see. As I’ve noted before, pemetrexed is not very debilitating. Basically, I feel a little unwell for about a week, so I’ll be able to continue as long as it is needed.

David

Summer Break Continues

I had a CT scan on Monday, and the results showed no change in my tumors, so I will continue my chemotherapy break.  I go back in eight weeks for another CT scan, and we'll see where we go from there.  I went into my meeting with my oncologists slightly favoring a resumption of chemo if the CT showed no change, but they both said in essence, "If it ain't broke, don't fix it"  I'm fine with that and look forward to eight "normal" weeks.

I've really enjoyed the break which allowed us to make a trip to see our older daughter Sarah and her family in Long Beach with stop offs at Hoover Dam and the Grand Canyon, hosting three sets of guests here, and replacing the overgrown junipers in front of the garage.  Don't know what the next eight weeks hold.

School's Out for the Summer

I feel like singing the chorus from Alice Cooper’s “School’s Out for the Summer” because I have a six-week break from chemo. Three weeks ago I had raised the possibility of a break in therapy with my oncologist. My chemo is not particularly debilitating, but after seven rounds from December to the present I was ready for a break. It play havoc with my blood sugar levels for a few days each cycle, and I have days of feeling unwell and fatigued. My doctor was generally supportive. The idea was that I would have my periodic CT scan this week, and if the tumors had grown, I would probably start another chemo. If they remained stable, then I would take a break followed by another CT scan in six weeks to determine whether or not to continue the break.

I got the results of the CT scan yesterday, and surprisingly my tumors were smaller. That’s the first time they had shrunk. That kind of upset the logic of our original thinking. Who would have thought that the tumors would be smaller? (Assuming that the findings are not the result of the unreliability of the analysis of the scans.) What to do? Should I continue with the chemo because it seems to be having an effect, or should I take the break on the assumption that they would remain stable for six weeks? The break would give me a chance to become stronger and get my elevated blood sugar level under control. There is no research to suggest that one course of action would be better than the other. There are just too few people with mesothelioma and too much individual variation for such studies to be done. After a good discussion, I decided on the break. I’ve always felt that when faced with a decision for which no option is clearly best, then you should go with what makes you happy, so I’m taking a break.

I don’t expect to add any new posts for six weeks or so.

David

Biopsy Results

Tonight, I got a message from an old friend, Karen Banks, reminding me that I had not posted the results of my end-of-March chest biopsy. The PET and CT scans at the time had shown an area that seemed to be growing while other sites remained stable. The Tumor Board recommended a biopsy of the site because they could not tell whether it was tissue or fluid. Luckily, it turned out to be fluid with no significant characteristics, and on April 3 I got my sixth pemetrexed infusion of this second round of chemo. This week I went in for the seventh round on Tuesday, so I am a little under the weather right now. I'll have another CT scan on May 14, and at my pre-infusion appointment with my oncologist on Tuesday, I asked what he thought about my taking a two month hiatus if the CT results show that the cancer is stable. This kind of chemo is not particularly debilitating, but it would be good to have a break and regain my strength and health a little. The steroid (dexamethasone) that I take at the time of my chemo and my lack of exercise and my poor diet have raised my blood sugar to unacceptable levels, so a break would also help me get it under control again. He thought it would be a good idea, so I'm looking forward to the CT results in May.

Nothing new on Jana's CML. Everything is under control, and she has been busy working in the yard and making things with her sewing/embroidery machine.

On a personal note, we are looking forward to going down to Big Bend National Park for a few days with our friends Tim and Susan Kilkenny. Jana and the Kilkennys will probably be focusing on what birds and wildlife they can see, and I will be more interested in taking pictures of the place. I just ordered a digital 3D camera and look forward to exploring what it can do.

Thank you for following our blog.

David

Some Encouraging News

When I was diagnosed with mesothelioma, the initial surgical options were to have a pleurectomy/decoritication (P/D) in which the lining of the lung and the chest cavity and any observable tumor tissue are removed or an extrapleural pneumonectomy (EPP) in which the lung is removed as well. I was scheduled to receive the EPP, but when mesothelioma was found in the sack around the heart (the pericardium) the procedure was changed to the P/D.

I receive email postings from a site called OncologySTAT, and today I read the abstract of a study that found that the E/D was superior to the EPP. For example, the two-year survival rate for the P/D was 49% versus 18.2% for the EPP. The respective five-year survival rates were 30.1% and 9.1%. My conclusion is that the extra risk associated with the lung removal outweighed the more complete removal of the tumor tissue. When I last saw my surgeon, just before moving to Denver, he seemed surprised at how well I looked and noted that perhaps it was best that he could not do the EPP. Now it looks like he was right.

I am encouraged to see the survival rates because they are greater than I expected from what I had seen previously. The results give me hope that I will live long enough to have real conversations with my grandchildren and to do things with them that they will carry in their memory into adulthood.

On another topic, no significant news from my appointment with my oncologist yesterday. It will be a week or so before the pathology report on the fluid removed from my lung will be ready. It will tell us how many cancer cells were present in the specimen and perhaps provide a better understanding of the cause of the fluid collection. I had an uneventful infusion following the doctor’s appointment and will have one more round in three weeks before my next CT.

Here’s the link to the abstract: http://www.oncologystat.com/journals/journal_scans/PleurectomyDecortication_is_Superior_to_Extrapleural_Pneumonectomy_in_the_Multimodality_Management_of_Patients_with_Malignant_Pleural_Mesothelioma.html

David

Chest Biopsy Results

Readers may remember that recently a suspicious area in a CT scan had grown significantly over a six weeks period while other areas remained stable. My case was presented to the Tumor Board, and it was determined that the CT’s were indeterminate, so they recommended a biopsy of the area to determine whether it was fluid or tissue.

I had the biopsy today, and it was another interesting experience. I was happy that they needed me to be awake and able to respond to their orders, because I wouldn’t have learned anything had I been unconscious. Here’s what happened. After being dressed in a gown and placed in bed, I was wheeled over to the radiology department where I was placed in the CT machine. If you’ve ever had a CT scan, then you know that you are placed on a narrow bed and moved feet first into a machine that looks something like a giant doughnut. The doctors took a preliminary scan and studied it to plan how to get the needle through the overlying tissue. There were three areas of risk. First because they were going to have to go through the lung, there was the risk of a lung collapse because of air leaking from the puncture site. There was also a risk of bleeding, and finally a risk of infection. The doctor who visited with me prior to the procedure said they might not be able to find a safe path to the target because of the location of the target area (near the middle of the chest and near the major blood vessels at the top of the heart) and might have to cancel the procedure.

They found a path and began by giving me a local anesthetic at a couple of locations on my chest. That was the only painful part of the procedure, and it was really just a pin prick. Then the doctor began the procedure. I was not able to observe much visually because they took away my glasses, but I could tell what the doctor was doing. He would insert the needle, then take quick CT scan to see where it had gone. Then the two doctors would say a few words about what to do next, and repeat the process.

After a few minutes they reached the target and withdrew a sample—a fluid not tissue. I was pleased to hear the news! I do not know how much better it is to find a fluid, but in my ignorance, I’ll take fluid over tissue. The fluid was slightly darker than what I would call “straw colored,” and I was glad to see that it was clear. That’s got to be better than cloudy. I’ll see my oncologist tomorrow and find out more where the liquid might have come from and it’s significance. It will be about a week before the complete results come back from the pathologists.

After the procedure, they gave me a chest x-ray that showed no complications and took me back to recovery where I was to wait for four hours. After a couple of hours I had another chest X-ray that also showed no complications, so they cancelled the third X-ray and let me go an hour early. Unfortunately, the nurse failed to call Jana to come get me, so I sat in the waiting area for the third hour anyway.

All in all, it was a successful day.

David

The Tumor Board's Recommendations

I got a call a while ago from Dr. Weickhardt with the results of the tumor board's review of my CT scans. As I wrote earlier, one area in the latest scan had grown significantly over a six-weeks period while other areas remained stable. The tumor board found that it was unclear from the images whether the area was a collection of fluid or tissue. Consequently, they recommended using a needle under radiological guidance to aspirate the fluid or tissue in order to determine its nature. I was very please with this recommendation because I have a hard time thinking that the area is a tumor because it will settle the question.

I will continue with my pemetrexed chemo on Wednesday, and when my blood counts have returned to normal they will do the aspiration. My money is on the results showing a fluid concentration because the area shrank and then expanded and did not light up the PET scan, but we'll have to wait and see.

David

Chemo Postponed

My next round of chemo has been postponed until next Wednesday.  It was scheduled for today, but the oncologists want to wait until the Tumor Board revoew my PET and CT scans on Monday.  The PET/CT from last Monday found one area that appears to have grown in the last three weeks.  The oncologist showed me the last five or so scans, and the area of interest is associated with the pericardium (the sack around the heart).  Between August and about December the area seemed to shrink.  Then it was essentially stable until this last scan.  It may be an area of fluid collection rather than a tumor, but it is hard to tell.  The Tumor Board is a meeting of the oncology staff in which cases are reviewed.  Multiple radiologists will be there to look at the scans and discuss what they see.  Dr. Weickhardt will call me on Monday to let me know what they think.  I have my next chemo scheduled for Wednesday, but the decision of what to do will be made on Monday.  If it appears that the area is not a tumor, then we will proceed with the current chemo.  If it is growing, then we will go with a new drug, or we might decide to take a pause and think it over.  One other puzzling factor.  The area did not light up on the PET scan which identifies areas glucose uptake like the brain or cancer cells.  That gives me hope that the area is a collection of fluid.  I don't know what that would imply or if it would be significant, but it seems to make the most sense to me--the only area to grow and no glucose uptake.

I'll write a post with the decision next week.

On the family front, we had a great visit from our daughter, Sarah, and her son, Jamie.  It was good to have both girls and their families (but unfortunately without Ryan) here together.  The noise and chatter was like a visit to the grandparents at Thanksgiving or Christmas.

David