Merry Christmas

In about one week, it will be Christmas. I want to once again express my deepest appreciation to everyone for their unbounded kindness to me and to my family these past 10 months. I cannot believe that this battle has been going on this long.

When this all started, I had imagined that I'd be out of work for a few months for surgery and treatment. I didn't realize the time all of this would involve and how it would drag on and on for so long. My employer has been wonderful and has assured me that I will have my job when I am ready to return to work. That is so wonderful. The discouraging part is that I still don't have any idea when I will be able to return to work.

In the mean time, I am scheduled for my next chest CT scan on Monday, the 22nd of December and the next round of chemo starts on the 29th, the following Monday and another chemo session about three weeks after that. For now, that is the only concrete schedule I have.

Twice weekly I go in for blood work to monitor my white blood cell count and my platelets. Monday of this week, my platelets were 106,000. Yesterday they had dropped to 88,000. The normal range for adult platelets is supposed to be around 150,000 to 450,000 and most people hover somewhere in the middle.

My platelets have to be at least 120,000 to allow for the chemo therapy - to assure that I have enough to endure the chemo again. That is why I have to have so many blood tests.

Getting my blood drawn isn't such a big deal. I have this central line in my chest and so I go to the ER where I have worked in the past and they draw the blood samples directly from the central line so I don't have to get poked so much.

Everywhere I go with my "hair hat" I get interesting and questioning looks. One of the ER docs particularly likes it and if I wear another hat, he asks where my hair hat is. So, last week, I wore my hair hat when I went for one of my blood draws and stuck it on his head - here's a picture. He loved it. This is the same doc that was there the day I went in with my infection and ended up in the hospital on IV antibiotics for four days. He's a great guy and I always loved working with him and the other docs in the ER there at Timpanogos Regional Hospital.

It is also great to go to the ER for my blood work so that I can visit with the great nursing staff there and kind of keep in touch with all of the goings on of the place. I really miss being able to work and take care of patients. It has been such a big part of my life for so many years in so many ways.

So in the mean time, I would like to take this time at this wonderful Christmas season to thank everyone for their prayers and expressions of faith. I know that without these prayers, I would be much worse off - health wise and spiritual strength wise. I so appreciate your expressions of faith. I cherish these with all my heart and thank everyone of you for including me and my family in your prayers.

A very good PA friend sent me the following link to a wonderful internet presentation on Christ. I hope that you have the time to view it. Here is the link (you'll probably have to copy and paste it):

http://www.OneSolitaryLifeMovie.com

Recently, I was sent another absolutely wonderful link to another presentation on the life of Christ that is profound and available for purchase in book form and on a DVD, but you can view it here as well. Please enjoy! Here is the link (again, copy and paste):

http://mabrystudios.typepad.com/reflections_of_christ/2008/03/reflections-sli.html

With every feeling I can generate, I express my faith and trust in my Savior. At this time of year, I so appreciate that I live in a country where I can express that faith without fear of prejudice, persecution or harassment. God bless everyone of you and may you have the very best of Christmas in your home and with your family and friends.

Jim & Patti Meeks

Slow Progress, But Progress

Slow as it may be, it is still progress. I am sitting in the infusion center today, receiving my second infusion of this round of chemo. For those of you keeping track, this makes my 8th infusion. I had two in March and April. Those were followed by 5 weeks of radiation therapy and then surgery on the primary tumor in July and then I had two more rounds of chemo infusion.

It was after those two infusions that additional cat scan studies showed that the chemo I was receiving was doing nothing for the cancer that has spread from the primary tumor under my right arm to my lungs. The decision was then made to switch to different chemo drugs as a trial.

What I have come to learn through all of this is that this is all a very slow process with time between treatments that is difficult to deal with. I am used to being busier. Although the chemo doesn’t leave me feeling very well or even capable of doing much between treatments, I’d much rather be at work and being productive – caring for my patients and providing for my family in the way I am accustomed to.

The new chemo drugs seem to be much less toxic mentally, but do leave me feeling quite sick for a week or so after I finish them. I’ve had problems with anemia and very low platelets, which put me at risk for bleeding and such.

Fortunately, the new drugs do seem to be working. As I reported previously, for the first time, it appears that there are no new lesions in my lungs and the previously noted lesions have reduced in size.

As I understand it, the radiologists have been measuring several of the larger lesions that are easy to identify on the CT studies. As time has gone forward, these have all increased in size from study to study and there had been a new crop of smaller lesions appearing throughout both of my lungs – too small to measure, but quite obvious on the images.

I have attached three imaged here to today’s posting. These are comparison views with an image from September on the left and an image from the most recent CT the first part of November on the right. Note the measured lesions on both images and see the difference in those measurements. There is some significant improvement.

Since these are 2 dimensional images representing 3 dimensional lesions, there is some formula that the oncologist here uses to estimate volume. I have long forgotten my geometry to be able to do that.

As we met with the oncology team yesterday, the oncologist (Dr. Lei Chen) was quite excited with the improvement in the CT scan findings. Because of the apparent success of this new treatment, she plans on two more infusion of which I have already had four – this will make a total of six with the new stuff and four of the old stuff. She informed us that this will be the maximum lifetime allowable of one of the drugs (doxirubicin) that has been used in both treatments.

I am scheduled for another CT scan on the 22nd and my next IV infusion on the 29th, 30th and 31st of this month. What a way to end the year. Three weeks later (or so), I will get the last infusion.

We were informed yesterday that the next step will be surgical removal of the residual lesions (the bigger ones) in my lungs. This will involve two surgeries, one for the left side, one for the right side. I don’t know in what order they will be done nor do I know exactly when they will be done. There has to be some time after the chemo, just like my last surgery, to allow things to settle down so that skin will heal and so forth. The idea behind this surgery is to reduce the overall “tumor burden” as much as possible.

Once again, I have to express my absolute thanks and appreciation to EVERYONE that has been with us throughout this process (slow as it is). Without the faith and prayers of all of you, we are sure that we would not be where we are in this – making progress!

God bless you all!

Jim & Patti

Prayer

“Dear Jim,

We have never met. We do not know one another yet we are brethren in Christ, and in occupation. Know that I likely represent countless others who might not post because they do not know you, but I hope it helps to know that we are out here praying for you and your family.

May He bring your perfect healing and a peace that passes all understanding.”

My dear family and friends, how can I ever thank you enough for your prayers and sustaining thoughts. Everyday is a challenge. I battle some discouragement because I never thought that it would take this long to get past all of this. In my minds eye, I thought I’d be back to work long before this. The struggle within is indescribable at times. Yet, when I receive a message like the one I received this morning (above), how can I be impatient or discouraged? I have been so blessed.

I have my sweetheart of nearly 35 years (we met in high school in 1974) at my side. I have my wonderful children, their spouses and our two grandchildren all checking on me, praying for me, lifting me up. I have so many wonderful friends, family and neighbors that stop by to visit or drop off a meal or a treat or call to see how I am doing. I have so many good PA friends around the country that check on me and have helped in so many ways in our time of need.

And then I have these wonderful but anonymous messages from other PAs that I do not know and will probably never meet. Yet the messages of faith and hope are invaluable to me. I so appreciate the prayers and encouragement. Thank you to all.

I have neglected to update this blog for a while because there hasn’t been much to update. I just completed round three of this current regimen of chemotherapy. Although not as psychologically toxic as the previous chemo and somewhat less bothersome in many other ways, it is still difficult. As I think I have surmised before, the effects seem to be cumulative. By that I meant that it seems that each time I get the treatment, the sickness that follows is more pronounced.

I completed the infusion of IV drugs on Friday last week and continued the oral drugs until Monday. However, I spent most of Saturday through Monday in bed. Just as before, exhaustion seems to be the primary side effect. Weakness and shakiness all over are the hallmarks and they tend to linger until just before the next round of drugs. Then there is this darned chemical taste that I cannot get rid of.

Actually, food doesn’t taste too bad while I am eating it, but after, I am left to deal with this nasty chemical taste that just won’t go away. About a week from now, it will start to taper off and I hope to be able to enjoy Thanksgiving dinner with family just in time to go back for another round of chemo the following week.

This last round of chemo was postponed one week due to severely low platelets the week before when I was scheduled to have treatment. That puts me another week behind. Blast it all!

The plan at this point is to complete this round of four treatments without killing me off. I have to have frequent blood draws to monitor my blood. I’ve actually been doing this all along. I just hope that my system can keep up this time and allow me to get the next round of chemo when it is scheduled (Dec. 3 start date). After that, another CT scan will be ordered – probably about three weeks later – to see how the cancer in my lungs has responded.

We were very encouraged with the last CT report and are hoping for more of the same with this next one.

In the mean time, I am trying to suck on strong candy or eat strong flavored foods to cover this nasty taste and make it to next weeks celebration.

God bless you all. Thank you! Have a wonderful Thanksgiving!

Jim

Some Good News

I am happy to report that I have some good news today, but first a little update on things since my last posting.

After I was discharged from the hospital on the Friday before last - having been treated for the infection in my central line - I have felt pretty darn good. In fact, I have felt better than I have for about a month which makes me wonder if that infection had been brewing for a while.

I have been having blood work on a fairly regular basis after each round of chemo and discovered last week that I am quite anemic with a very low hemoglobin (carries oxygen) of 8.8 (normal is 12.5 to 17) and a low hematocrit of 24.7 (normal is 36 to 50). Additionally, my white blood cells are only 2.4 (normal being 4 to 10) and my red blood cells only 2.82 (normal being 4.1 to 5.6). My platelets (elements that allow blood to clot) were very low in the hospital the week before last - so low in fact (only 26,000) that I had to be transfused with platelets before they would attempt to take out the infected central line. Normal levels of platelets are supposed to be 140,000 to 415,000.

All of this is common with chemotherapy and not unexpected. That is why they have me check my blood often after each round of treatment. The hospital called me Friday and asked me to meet with an anemia specialist on Monday which we did. After a long discussion about this condition, I was given the option for an injection of a medication that boosts production in the bone marrow of these blood products. However the injection is not without risks including blood clots. The funny thing is that on Monday morning while getting showered to go to the cancer hospital for this appointment, I discovered a blood clot in my left calf (lower leg).

Since I have been feeling pretty good since getting the infected central line out, we decided to hold off on any injection and to monitor my blood. Since I don't really feel too pooped out, we can wait. Being tired and run down is the criteria used to decide when to give the injection. You know, "treat the patient, not the lab results" is the old adage that has served me quite well throughout my medical career.

Needless to say, we spent a great deal of Monday at the hospital making sure that I don't have a deep vein blood clot. That would not be a good thing. The clot I do have is a superficial clot and can be treated with elevation and heat. I does hurt if I push on it, so I try not to do that.

We returned again to the hospital yesterday. My platelets have improved to a level of 73,000 so I was taken to surgery for placement of a new central line in preparation for more chemotherapy. That was done without any difficulty, but I am quite sore today. Previously, my central line was on the right side of my chest. Now it is on the left. Both places are rather sore. They will heal!

I was supposed to start chemo again today, but because my platelets are so low, we have to wait until next week sometime (waiting to hear from the scheduling office) to start. My platelets have to be over 120,000 to start the chemo.

So now finally, the GOOD NEWS. I had my chest CT scan and an MRI of my right arm pit (where this cancer all started). For the first time, it appears that the cancer in my lungs is responding to treatment. All of the previously measured lesions have decreased in size and there are no new lesions at all in my lungs. The lesion in my spine has not changed and there is no evidence of any tumor in my arm pit. This is all good news. The chemo seems to be working.

I thank everyone, EVERYONE for their prayers of faith. I am convinced that without such prayers of faith and the intervention of my Heavenly Father, this would not have happened. We are very encouraged about the outcome and affirm our faith in God the Father and His Son, Jesus Christ. We are truly blessed with so many good friends and family. We so appreciate being included in your prayers and fasting. This is a miracle in our lives. Thank you to all.

I don't know when we will do further CT scans or MRIs, but I still have two rounds of this chemo program to go through. I suspect that another CT and MRI will be done then. What happens after that hasn't been discussed yet. My hope is to be able to return to work and service of my fellow man.

Many, many thanks to all!

Jim

A new experience

I have a list, and I’m pretty sure that everyone else probably has the same list. I call it my “worst experience of my life” list. The problem is that I keep adding to it. And of course, I now have a new experience to add to this list that for some reason, just keeps growing. Let me tell you about it.

Tuesday morning, I got up looking forward to a good day. Monday night, I had taken my last dose of oral chemo medication for this round of therapy. Typically, after this, I can start looking forward to a week or so of feeling better before I start the next round of chemotherapy. The day began well enough. I went to the hospital to have my blood drawn as I am supposed to do twice a week after chemo. I returned home, relaxed for a few minutes as Patti got ready to go over to our daughter’s house to watch our two grandkids. We try to help out when we can since Mariah (our daughter) works two days a week as an MA in the family practice office where I have worked for the past 6 years.

Anyway, Patti left a little after 8:00 a.m. and I was here alone (Patti always worries about leaving me alone here asking me if I am sure I will be alright). I checked a few e-mail messages and answered a few then went into the kitchen to have a bowl of cereal. I ate well, watched a little TV news, a couple of minutes of “The Price is Right” and then called over to the hospital to check on the blood work results. At about 10 minutes after nine, I began to feel a little chilled. I checked the thermostat - the temperature was 72 degrees. Within minutes, I was shaking all over and didn’t feel very well. I decided to crawl back into bed to get warm for a while.

Shortly, I began to experience the most violent and severe shaking I had ever experienced in my entire life. I don’t think in all my years of medical practice that I have ever seen anyone shake as much as I was except maybe in a grand-mal seizure. This shaking went on forever. I finally called Patti and told her I needed help. I ached all over as if someone had beaten me with a ball bat and I was still shaking so uncontrollably that I just couldn’t stand it. Patti arrived just before 10:00 a.m. and at just about that same time, everything started to settle down.

Patti swears that she will never leave me alone again. She says that I looked horrible. She called the oncology nurse at the Huntsman Hospital in Salt Lake to report what was going on. They advised us to go to the ER here in our area to get checked.

It took every ounce of strength to drag myself out of bed and get to the car. I had been shaking for nearly an hour. We went to the ER at Timpanogos Regional Hospital in Orem, Utah, the ER where I had moonlighted as a PA for nearly 4 years. I know most of the docs there and many of the nurses and this is where I go for my blood draws because of my central line. They can draw blood right out of my line without having to be poked in the arm twice a week.

So, ultimately what happened is that I had a fever of 102.5 degrees. Blood cultures were taken (one sample from my central line and another from my arm) and I was admitted to this hospital because when the ER doc called the cancer hospital, they had no beds. I was able to request a very good internal medicine doc that I have worked with and known for a number of years as my admitting physician since I haven’t had a primary care provider forever. There are advantages to working in the medical field. The hospitalist that was on call for that day isn’t one of my favorite people – I won’t go into details about that, but I was thrilled that the doc I asked for was willing to admit me.

I was placed on IV antibiotics (Imipenem) and placed in an isolation room on the 4th floor of the hospital. I ran a fever for another 24 hours but felt much better on Tylenol. My initial blood pressure in the ER was 87/59 so they gave me fluids as well.

Ultimately, the blood culture drawn from my central line grew out bacteria known as streptococcus viridans. This was interesting because the blood culture drawn from my arm showed no sign of bacterial growth so the infection was within my central line. It has been in place since February. The next task was to get rid of the central line.

The concerns for my doc were the fact that I had rheumatic fever when I was 19 and ended up in a hospital in El Salvador for two weeks for treatment and the fact that my mother had bacterial endocarditis (an infection within the heart) that ultimately destroyed her aortic valve and resulted in her having two valve replacement surgeries in the early 1960s when that kind of stuff was experimental. This particular strain of bacteria has the potential to cause bacterial endocarditis. Great. Just what I need at this point in my life.

A wonderful (patient, kind, conversant, jovial, etc.) general surgeon was called in to remove my central line. She worked on it for about an hour and could not get it to release and come out. Try as she might, it was just stuck somewhere. I could feel tugging clear up in my neck as she worked on it. You see, the central line is a plastic tube that enters my chest at about heart level just to the right of my breast bone, tunnels up through the skin, over the top of my collar bone and then enters my jugular vein and into the top chamber of my heart. This is the way I receive fluids and drugs for my chemotherapy.

Finally, the surgeon decided to call one of the vascular surgeons in town. She explained the situation to him and he showed up in about twenty minutes. After about 30 minutes of him gathering supplies and getting his gloves on, putting on sterile drapes and so forth, he took one look at the central line, said, “Oh, I see the problem.” I heard a snip and felt nothing. He pronounced that he was done and I thought he was pulling my leg. He reassured me that he was indeed done and that was that. He put on a bandage, recommended that I not cough, sneeze or lay flat for 24 hours and let him know if I needed an new line put in because he’d be happy to do it in about a week if requested.

As a result of having my central line out, I had an IV started in my right hand to allow for infusion of the IV antibiotics and fluids. I had an echocardiogram of my heart Friday morning – results still pending.

I am feeling much better. In fact, I feel better now than I have for about a month which makes me wonder if this infection wasn’t smoldering for some time.

I am already scheduled for placement of a new central line on the 4th of November at the Huntsman Hospital. I will also be getting a new chest CT that day to see if the new chemo drugs are having any effect on the cancer. I’ll also have an MRI of the primary tumor site to see if there is any discernable regrowth at the excision site.

The worst part of this - that I am adding to my “list” - is the violent and uncontrollable shaking that started on Tuesday morning. I have never before experienced anything like that and I hope to never do so again. I hope my list is completed. I would be just fine with that.

Many, many thanks to everyone that helped! The ER staff, the hospital staff, my internal medicine doc, the general surgeon and the vascular surgeon, family and friends who called. I am so thankful for their kindness and genuine care. I am so blessed.

Jim

The Latest Round

Once again, good morning to everyone. I so appreciate the kindness of everyone that checks this blog. Your comments and well wishes are so welcome. We so appreciate the visits, calls, food baskets, cards, singing on the porch and every act of kindness. We are truly blessed by good neighbors, friends and family. Thank you.

I just completed another round of chemo IV therapy on Wednesday and continue to take the oral drugs through next Tuesday. It seems to be going a little better this time. I prepared in advance for the digestive issues and so far, I seem to be doing better without all the upset stomach and bowel issues. I can't say for sure how it will go until I finish taking all the oral drugs. That remains to be seen.

I certainly appreciate being able to come home from the hospital after the IV infusions. The previous chemo was so much more bothersome and staying in the hospital for 5 days each time was not my choice for spending time. It is much better to be in my own bed with my sweetheart every night.

The routine now goes like this. We leave here early on Monday morning and arrive at the Huntsman Cancer Hospital Infusion Center a little after 8:00 a.m. After checking in, the nursing staff draws blood to run some labs to be sure that I can tolerate the planned chemotherapy. The easy part about that is that I still have a central line in my chest that was placed there in February. They take the blood out from there and put the chemo drugs in there too. No needles in the arm.

Fortunately, I have never had to have treatments put off yet, but the other day, a young lady next to me was sent home for a few days so that her platelets could recover. How disappointing that must have been. I can only imagine.

Once my blood has been cleared, the nurses (all of whom have been absolutely wonderful) have to pre-hydrate me with fluids and pre-medicate me with steroids and anti-nausea drugs. Following that, I get the first bag of chemo (Doxil) which takes an hour. That is followed by the second chemo drug (Cisplatin) that takes another hour to run in. Finally, both of those are followed by more hydration fluids which have to run in over another two hours. That is the plan on Mondays. Tuesday and Wednesday aren't so bad because I only get the second IV drug on those days so the treatment is an hour shorter on those days.

My poor sweetheart really gets tired of the sitting (so do I), but she is right there by my side for it all. What a trooper! At least I can lie back and snooze some. Do you like my "hair hat?" My good friend from Texas brought that to me. I get a lot of great comments on it.

On Monday, after the chemo was completed, we took a little walk over to my Urology Clinic at the University Hospital to visit the staff I work with there and to give them an update on the treatments, etc. The two hospitals (Huntsman and the Univ. of Utah Medical Center) are connected by tunnels and elevators, so it is a pleasant stroll to get there. It is always so good to see my colleagues there.

It was fun to discover that the powers that be finally got my name on the clinic sign. I had wondered when they were going to do that. I worked there for 7 months with out it. Now that I've been on sick leave for 8 months, there is my name! Imagine.

I was able to access the images of my last chest x-ray and chest CT scan. I'll post a couple of those images here for you to see.

Essentially, what you will see is one CT image with a big circle around a lesion in the front of my chest. This is a lesion that went from about 5 millimeters in size to about 19 mm in a matter of a few weeks while I was on the previous chemotherapy. The second CT image shows a new lesion in the left lung field that wasn't visible previously. Those two items alone were enough for the oncologist to switch treatment to this new program. The chest x-ray is much harder to see, but I believe that if you click on it, it will enlarge and you can see some faint circles or blotches throughout the lung fields. Well, these are the cancer lesions I am now fighting to get rid of. In the CT images, basically most everything that is white and round is a cancer lesion as well.

This is all so fascinating to me medically but challenging to us personally. I have to find some balance in all of this.

Jim

Faith, Hope, Patience

Two weeks ago today, I started the new treatment program. Although it hasn 't been anything like the inpatient treatments, it continues to pose it's own challenges.

The inpatient treatments as I have explained previously were quite distressing in the psychological aspects. This fortunately is not the case with this new program. I am most grateful. Especially since I go back a week from today and start it all over again.

Primarily, I have been dealing with a poor appetite and fatigue again. I had some difficulty sleeping a few nights, but that was fleeting and for the most part, I am sleeping well again.

I do have to deal with constant chemical taste in my mouth. This is different from the "rusty nail" taste I had with the previous treatments. Instead, I always taste some kind of unpleasant chemical that I am unable to describe. When I try to eat, food for the most part tastes pretty good. Afterward however, I am left with this taste and a sour stomach.

My bowels haven't reacted very well either this time. I feel a little bloated all the time and feel a constant need to move my bowels. For a while - the first few days - I was quite constipated, but that has resolved and now leaves me with frequent trips to the bathroom to only pass small amounts of stool and lots of gas every time. It's better than being constipated but the repeated efforts to try to go are getting old.

Generally, I feel fairly well, just profoundly tired. I walked out to the mailbox the other day and by the time I turned around to come back to the house, Patti had to help me because I became all shaky and tired. I have improved though and felt well enough to go to Home Depot with my little brother this past Saturday to get some stuff. While I was standing there, not doing anything, just looking at stuff on the shelf, I got hot, sweaty and all shaky. That lasted about 2 - 3 minutes and then resolved. It was my first trip out of the house in a long time other than to go to the hospital for blood work which I do twice a week. It was good to get out and do something, but it took a toll on me. I had to rest when I got home.

This is still all so foreign to me. I used to get up at 5:00 a.m. everyday and be busy all day and all evening. I'd get to bed about 11:00 p.m. and then start the same thing all over again. Now I feel lucky to do the few things I do without collapsing or having to use a walker.

Hopefully, the end is in sight. Our hope is that this new treatment program combined with all the wonderful prayers and faith of our friends and family will soon bring the response we are looking for. We put our faith and trust in God and in our Savior. After all, His love is paramount and all encompassing.

I do not stress over this. I do not spend any time wondering "why me?" Actually, I have never asked that questions. I figure after all the suffering and pain I have seen in my days as a paramedic/firefighter and as a PA, it's just my turn. I take it one day at a time and feel so blessed by so many people. I just want it to be over so I can go back to taking care of my family and my patients.

The wonderful phone calls and e-mails, and cards, and prayers and faith and everything are overwhelming to me. A wonderful friend and neighbor brought by a gift just this morning - a framed quotation that says, "God didn't promise days without pain, laughter without sorrow, nor sun without rain . . . but he did promise strength for the day, comfort for the tears, and light for the way." How wonderful. I am honored to be remembered and so blessed by so many.

Jim

New treatment update

It has been difficult to get motivated this week, at least about writing. The chemo infusion started on Monday and followed on Tuesday and Wednesday. Coming home every day was the real blessing. I tolerated the infusions fairly well and had very little side effects. On Tuesday, day two of this new treatment program, I also started taking the oral medication at night. Again, I had little difficulty with this either.

Yesterday was a pretty good day. I was able to keep myself busy with little projects here on the computer and reading news stories, but I began having a lot of heartburn. That has subsided today fortunately.

I am supposed to drink 2 - 3 quarts of fluids every day as well. That is a real challenge, especially when I then have to make 4 - 5 trips to the bathroom during the night. I tried to be a good boy and drink a lot yesterday, but then last night was often interrupted by trips to the bathroom. At least I know that my kidneys are working well. The price I pay for trying to do what I am asked to do. Needless to say, I have cut back a little on fluid intake today.

The interrupted sleep has taken it's toll on me today. I am tired, weak and kind of shaky all over. I am sure this will pass with the rest I am trying to get.

I don't have much else to report. I am very hopeful that this new concoction of drugs will be more effective. If so, it is all worth the lack of sleep and whatever else comes with it. I have four more days of the oral meds and then on the 14th I restart the entire process all over again.

Additional studies (CT and MRI) are anticipated on or about the 3rd of November to determine if this is going to help. I certainly hope so. I have too much to do to be sitting around waiting for all of this to be over with. I'd really like to get back to work and care for MY patients.

Thanks to all for continued prayers and kind thoughts. We are so appreciative and certainly blessed by each of you.

Jim & Patti

Change of Plans

Good afternoon to everyone. We have had an interesting day. Unfortunately, the news isn't very good. The CT scan done this morning hadn't been read officially at the time of my doctor's appointment at 10:30 this morning, but Dr. Chen invited Patti and I into the viewing room to look over the images and to compare them to the ones from July 21st, the last one I had done. What we did see was enlarging lesions in several areas of the lungs and a few more scattered new lesions.

What this means is that the chemotherapy I have been getting has mostly been ineffective and I wasn't admitted again to the hospital (YIPPEE!). We discussed options for treatment at this point and discussed several types of chemotherapy that have been used for sarcoma. Not many of which she favored due to being ineffective as well.

Ultimately, Dr. Chen recommended a cocktail of drugs that she has used for sarcoma with some success pointing out that a previous patient with sarcoma in three body areas did respond well to this regimen. This involves no hospital admission, but does require three days of infusion of two of the drugs and taking an oral drug for a certain number of days during each cycle. This process would be repeated every three weeks and has all the same potential side effects; nausea and vomiting, loss of appetite, kidney problems, increased risk of infection, bleeding, ringing in the ears (I've had that for years anyway), allergic reactions and of course, potential for causing leukemia months to years down the road. Oh yeah, hair loss, but I have that problem solved with my Spiffy Jim's Toupee Kit.

I don't know for sure how many cycles of treatment are going to be given. Just like this last treatment program, after two or three cycles, I will have another CT and or MRI to see what is going on with the sarcoma.

The 2 new IV drugs are; Cisplatin and Doxorubicin Liposoma. The oral drug is Temodar. The oral drug is new and we checked with the pharmacy there at the hospital and discovered that our co-pay for this new oral drug will be well over $600.00 every cycle.

This morning, Patti had shirts ready for us to wear that were matching in color. When we got to the clinic, the medical assistant helping us had on scrubs the same color. Now talk about color coordination, who would have ever thought that we'd all show up in the same color. It was quite amusing.



Once again, I express my sincerest and deepest appreciation to everyone for their continued prayers and well wishes. You keep us both going.

God bless you all.

Jim & Patti

Hair alternative

It is a wonderful blessing to have so many people watching over me. I am so blessed by everyone's messages, well wishes and acts of kindness. Thank you to all.

Today, I have to highlight one of my sisters (I have 5). It is totally amazing to have someone in the family with creative talent. When that talent reaches a point of sophistication that I don't even recognize it for what it is, well, it is awesome.

As you all know, I have lost most of my hair. I still have some stubble on my head, but it was so scraggly that I cut off what was remaining in exchange for baldness. There are advantages to all of this as well. I haven't shaved for a month and I haven't had to go to my barber for 6 months. That is a distinct advantage. With close to 90% of my body hair gone, getting showered is like washing a new baby if you catch my drift. No shampoo, just a quick slick body lather and rinse and I am done.

So here is what my little sister did, she sent me a package last week or so. When I opened it and looked I laughed. She had sent me a "Spiffy Jim's Do-It-Yourself Toupee Kit." Yup, a do-it-yourself toupee kit. What a great laugh. I loved it.

Later in the evening, I was showing it to my youngest daughter (17 - high school senior) and telling her what a great gift it was. Then, I suddenly realized that the picture on the packaging looked like me. I turned it over (which I hadn't done before) and suddenly realized that this wasn 't some off the shelf gag gift, she had created the entire thing herself. I was blown away. It even included a personal message from her. Here are some pictures. (What you can't see very well is that there is a huge mound of BLACK hair right next to the Krazy Glue. Fantastic!)


What a wonderful sister. THANKS SUSAN!! God bless you. You have blessed me!! Personally, I like the mohawk look, but the full head of hair on the right is REALLY tempting!

I think that if you click on the picture, it will enlarge so you can see all the AMAZING detail she put into this.

Cancer progress is otherwise unknown for now. On Monday the 15th, I am scheduled for blood work and a chest CT. Later in the morning, I meet with Dr. Chen (oncologist) to discuss results of the CT and treatment. For now, I am scheduled for another admission that same day, for more chemo.

The decision of whether or not to continue with the current treatment program will be based on the CT findings. If the metastatic lesions in my lungs have not progressed or better yet, have diminished in any way, then we will continue the current chemo. If there is significant growth, then we will talk about alternative chemo treatments. The current drugs I am receiving are what are considered the best for the sarcoma I have. If they aren't effective, then the only option is to try newer drugs that have no track record with sarcoma.

We are hoping that the current treatments will be effective. I'll update this again next week after the treatment decisions are made.

God bless you all. Thank you for everything. Jim

Chemo Still Sucks

Once again, I am deeply humbled by the many well wishes, phone calls, e-mails, messages and visits. Thank you so much for checking in on me and on my family. We truly are blessed by each of you.

This last go round of chemo has been in some ways more difficult than any before and in a few ways, a little easier. I entered the hospital on the 25 of August as planned and wasn’t feeling too bad at the time. The first couple of days weren’t too bad. The physicians decided to increase my dose of thiamine (B Vitamin) to help with the effects of the Ifosfamide, one of the cancer drugs. What I have discovered is that the neurotoxic (messes with my brain) effects of Ifosfamide, at least for me, seem to be cumulative. Essentially, every time I am given the drug, the effects seem to be stronger.

Thiamine is a vitamin complex that we used to administer to drunks when I was a paramedic years ago. The idea was to help them with mental function by replacing depleted vitamin B which was often missing. Anyway, my docs at the cancer hospital increased the dose because I had told them I felt it was helpful.

Previously, I had suffered from disturbed sleep and a fog that seemed to settle over me making doing tasks such as reading or writing very difficult. On my previous admission, the fog seemed less bothersome so they decided to increase the dose during this last admission. It did help with the fog, but the nighttime problems continued to be a big issue for me.

The very first time I had chemo, on the second night in the hospital, I experienced visual flashes all night long. It was like viewing a slide show. Vivid images were flashing by every second, all night long. I was able to get through the night, but it was difficult. I asked for some Benadryl the next night and that seemed to help although not eliminate the problem. So, I took Benadryl every night for the rest of that stay.

On my next admission, I had more of the same and once again Benadryl seemed to help. They did send some lorazepam (a tranquilizer) home with me that time and I tried it once only to find that it was much less effective than the Benadryl. The brain fog was quite evident during and after those first two chemo sessions.

So on the 4th of August admission, we started the thiamine and that really seemed to help the fog brain during the day. Nighttime was another issue. I have these vivid dreams. They often start with the flashing images and then I get fixated on some topic that plays over and over and over all night long. You have to remember that because of all the fluids being pumped into me, I have to get up and go to the bathroom quite often as well. Usually, when someone wakes from a bad dream, they can go back to sleep and it stops or at least changes. Not for me. As soon as I am back asleep, it starts all over again and is extremely vivid.

During this last admission, it got really bad. It started on Tuesday night with a repetitive dream about how to say “thank you” in different languages. Now the only languages I actually speak are English, Spanish and Pig Latin. My mind was so focused on this that I was really stressing about how to say “thanks” in all kinds of languages. I’d wake up, go to the bathroom, go back to bed and again, over and over and over again, I’d be rehearsing “thank you” in all kinds of languages. I don’t even know if any of them were real, but on it went, all night, until I finally got up at 6:00 a.m. and read the news on the internet.

The next night (Wednesday) was worse. I kept seeing these images of blankness. Yes, a square blob of brown that kept being stamped like a rubber stamp over my field of vision. It too went on all night.

Thursday was the killer. I kept losing track of where I was. I’d get up, look around the room, tell myself that I was in the cancer hospital, go to the bathroom and then try to go back to sleep only to lose track of where I was again. Over and over, I’d wake with a start, look around, feel comfortable with my IV pole and fluids, the window outside and the bathroom and then lie down to go back to sleep only to startle awake again not knowing were I was. When the nursing staff came in at 4:00 a.m. for their customary check of vital signs, I mentioned to the nurse that I was having some difficulty sleeping despite the 50mg of Benadryl I had taken hours before. When she came back to check on me at 6:00 a.m., I was a wreck.

By 6:00 a.m. I had so totally lost my sense of reality, I wasn’t sure where I was. The nurse just happened to come and check on me (out of the goodness of her heart I am sure). I was so overwhelmed that I had to ask her repeatedly if I was still in the hospital and if I was who I thought I was. I was in tears, staring at the ceiling. The closest I think I have ever come to a total all out panic attack.

The nurse stayed with me for about 20 minutes or at least until my brain started to process information correctly. It was very a disconcerting experience. Later in the morning when my wife arrived and I shared this experience with her, she looked at me very lovingly and said, “Yes, I know.” She has suffered from anxiety, panic and depression for years. This time, I experienced her world. I didn’t do very well.

Typically, all of this stuff settles down within a few days of leaving the hospital. The Ifosfamide is given for about three hours on Monday, Tuesday, Wednesday and Thursday of the admission. I go home on Friday and today is now Thursday again. Last night was the first that I didn’t take Benadryl to get some sleep. The brain fog is mostly gone, but still lingers. I did wake last night for a bathroom trip at about 3:30 a.m. and didn’t fall back asleep until 5:00 a.m. this morning. Although very unusual for me, it was better than the dreams.

In eleven days, I have my next appointment with my oncologist. I’ll have blood work and a chest CT that morning and we will discuss the results. If this current treatment has stopped the growth or better yet reduced the number of metastatic lesions in my lungs, we will probably continue with another admission that day. If the lesions have continued to grow, we will have to come up with another plan.

One last issue I’d like to mention as a point of interest. On a previous blog posting, I included a picture of my fat feet due to fluid retention. This last admission was equally challenging on the fluid retention topic. My feet, hands and face all puffed up. The physician that day checked my numbers and told me that I was 10 liters of fluid behind on output versus what I had taken in. That was about 22 pounds of extra fluid in my system. No wonder I had fat feet. They reduced some of the fluids running in and it was all gone by Sunday. I felt much better.

God bless you all. Thank you for your prayers. The battle goes on.

Jim

Hair Loss

For most people, men at least, hair loss is a given. There are those that get to keep most of their hair and that is fine too. However, losing all of your hair, growing it all back to a point where you can actually comb it and then having to lose it all again, well, that just isn't FAIR!

LOOK - this is what I had when I woke up this morning. It all started Monday.

















































This is what I had after I talked Patti into cutting it all off.






















Better than this morning, but not what I really wanted. Some say bald is beautiful. Me? Well, I'd just as soon have what hair I have as long as I can. And no, I don't do that comb over thing!

The only positive part of all of this is that my beard falls out too and last time, I went about 6-8 weeks without having to shave. Now that isn't a bad deal and maybe even worth the loss of hair.

Monday, I start the next round of chemo at the Huntsman Cancer Hospital. This is the second since restarting chemo, but it is the 4th overall. I had two infusions in March of this year, then radiation, then surgery and now chemo again. I wish it all moved faster.

God bless everyone! Thanks for all your prayers and kind thoughts. We do appreciate them.

Jim

A BIG Day

Today, a few hairs started falling out again. It has taken me since April to get about 1/2 inch of hair on top of my head. After showering this morning, I was disappointed to see many more hairs than usual in the bottom of the shower. I gave a gentle tug on some hair and sure enough, it came out quite easily.

Someone told me that they always liked Kojak. I never did!

Thursday last week, my WBC count (white blood cells) dropped to 1,000. Normal is between 4,000 and 10,000. WBCs are needed to protect against infection. Since then, I have been on oral antibiotics as a precaution. Todays blood count showed improvement, but still below the 4,000 I need. My platelets were low too - they help your blood clot when you are cut, so they told me not to cut myself shaving or to hit my head on anything. Patti wonders what my blood counts would be like if I hadn't had that shot of Neulasta.

I return to the hospital for the next round of chemo next Monday the 25th. I so look forward to that experience.

The BIG day today is this. Patti and I celebrated our 30th wedding anniversary today. We were married on August 18, 1978 at 8:00 a.m. in the Salt Lake Temple. A lot of water has passed under the bridge in these past 30 years. They have been wonderful. We have five beautiful children, have added a daughter-in-law and a son-in-law and two extra beautiful grandchildren, many, many friends and wonderful neighbors. I work with some of the best people in the world. We can't ask for much more than that.

Many of you have commented on how much you enjoyed the nostalgic pictures from my missionary days, so I dug up some old pictures of Patti and I taken on this day 30 years ago. Wow, a lot of water has passed somewhere. I have changed a lot! Oh, and did I mention that I love the dickens out of her? I do!! I really do!!!

At the wedding reception.



















At the wedding breakfast.

August 12, 2008

I was right, chemotherapy sucks big time.

The first couple of days aren't too bad. I go in to the cancer hospital and basically relax. The nursing staff has to collect all the orders and then order the treatments from the pharmacy. Once those orders are transmitted, they start "pre-treating" me with steroids and fluids that protect my kidneys and bladder.

The unfortunate side effect of that is that once the chemo drugs arrive and they start those, my systems starts to back up with fluid a little. My ankles start to puff out and I start making lots of trips to the bathroom. About every 90 minutes or so, I pass about 400-500 cc of urine. That makes for a long night, every night.

Of course, the nursing staff has to check my vitals every 4 hours around the clock. During the day that's OK. At night, it seems to fall just after I've dosed off from a bathroom trip.

The entire infusion of chemo takes 4 days and then they make me wait another day while they continue steroids and protective fluids. It's on about the 3rd day that the side effects start to manifest themselves. One of the drugs causes some real issues with my brain function. I know that there are those of you that will say "so what's new?" I laugh with you. This is different. There is no real way to describe it. There is a certain separation from reality. Not detachment, because everything is still there, but it is a fog that settles over everything. My vision is affected in that everything takes on a shadowy appearance and is sometimes back-lit at the same time. This makes reading and using the computer a real challenge on the 3rd through 5th days. Once I come home, it continues for another few days. Today is the first that I feel like my brain is getting back to normal from these effects.

We were allowed to leave around 6:00 p.m. on Friday night. I arrived home and crawled into bed. Saturday, it took every ounce of energy to get up, shave and shower and then crawl into my recliner. I basically stayed there the entire time, except for continued trips to the bathroom. My ankles started to go down by Monday morning. Sunday wasn't much better. I stayed in bed until 2:00 p.m. and then moved to my recliner. No shave, no shower.

Nights are another challenge. The chemo effects on my brain mess with my ability to sleep. In the hospital, I have them give me Benadryl which seems to work pretty good. Once I get home, I usually continue for another couple of nights and struggle some and for a while it seems to be accumulative. Finally, last night was good. I slept through the night without Benadryl. Oh joy!

Also on Saturday, I needed to give myself some additional drug therapy. The hospital sent home two drugs that I needed to give myself. One for nausea that I gave through my central line directly into my blood stream, called Aloxi. The other, I have to inject just under the skin, kind of like a diabetic does with insulin. This one is called Neulasta and is some engineered drug that supports my immune system for the next few days to prevent infections since my immune system has been abused by the chemo. The interesting part is that last time I went through chemo and did this same the thing, the first one was billed at about $1,600 and the second at about $6,500. That is one whopping shot to give yourself and watch go into the skin as you contemplate the cost of it. I am thrilled to have it and to avoid the potential side effects without it.

Now to outlive the effects of the treatment and look forward to starting it all again on the 25th of August. Sometime in the next few days, my digestive system will get back to normal and I'll start enjoying food again. In the mean time, everything tastes like it is coated with plastic or like I have a rusty nail in my mouth.

I express to each and everyone the deepest love and appreciation for your kindness and well wishes. Some of you have sent e-mails in response to this blog, but when you don't include your e-mail address, I get the message, but no way to respond which I try to do always. So, please include your e-mail address so that I can keep in touch. Thanks to everyone. ONWARD!

Jim, Patti and Family

Chemo Sucks!

Hi to all once again. Your continual prayers, cards, e-mails, phone calls and visits are very much appreciated by us. We appreciate the prayers and support from everyone. You all certainly make this experience more tolerable!

I returned to the Huntsman Cancer Hospital yesterday. I had an appointment with my oncologist, Dr. Chen. We talked about the treatment plan that I posted previously. She plans on doing this five day infusion of doxyrubicin and ifosamide (the chemo drugs) every three weeks for four cycles. She will get another CT scan of my chest sometime after the second round of chemo to see if this treatment is having any effect on the cancer lesions in my chest.

I asked her about prognosis. She didn't really address that, but she did explain that there is no cure for stage 4 metastatic sarcoma. Management is what we are doing now with hope for a good outcome. She said that if we get good results with these four treatments, we may consider thoracotomy (lung surgery) to remove the larger lesions if they remain and the many, many small ones shrink or disappear.

So, here I am again in the hospital with my "Christmas Tree" of drugs. My sweetheart Patti has been as my side through all of this. She is quite distressed over this latest explanation of my condition. She was hoping for a cure and return to normal life. Anyway, she took this picture for me so you could all see what I am dragging around with me for the rest of this week. Going to the bathroom and showering are the biggest challenges with this thing in tow. I'm getting it figured out though, this is my third time doing this.

One of the nurses here yesterday had a button on her white lab coat that says "Chemo Sucks," so I thought that was an appropriate title for today's posting.

Just as an aside, Patti informed me that our trip to the cnacer center yesterday was our 61st. For us, that is an 85 mile round trip, every time. I know people that commute that far and further, every day. I don't know how they can afford it. Our gas bills have been horrendous.

I was able to get some images of the CT of my chest. The last one done, on the 21st of July. These are the ones that I posted the report of on my last blog. You can see the increased size of the big lesions and some of you may be able to see the many new small lesions throughout my lungs. Remember when looking at these that black is good - that is air in the lungs. Stringy looking white stuff is good too, that is lung tissue. The bad stuff is white and round.

These images are in no specific order. They do show some lesions with measurements on them. The measurements are in millimeters. The one that says 18.4 has another measurement that I cut off in the picture. The 18.4 is top to bottom, the side to side measurement is 21.3. This lesion started out a 5 mm. I think you can see it on the previous pictures that I posted before when it was much smaller. I think that ones that are attached to the outside walls are more concerning. If they grow big enough, they can penetrate the outer wall and then that would mean even more spreading of the cancer. So far that doesn't appear to be the case. I am thankful for that. I think that if you click on these images, that they will enlarge in size so you can see them better. Sometimes that works and sometimes it doesn't.

There is no telling where this will end or what the outcome will be. I believe in miracles and my faith assures me that all is in the hands of my creator. My savior is my redeemer. I have nothing to fear. I put my trust in them for the best outcome. I am ready and willing to pass through whatever is required. My fear is for my sweetheart. This all seems to be so much harder for her. I am thankful that it is me and not her that has this problem. She strengthens me and I try to strengthen her as best I can. She needs your prayers too and I appreciate that you include her and our family in your prayers.

God bless you all! The battle continues.

Jim

Physical Therapy

Once again, I have to express extreme thanks to everyone for the phone calls, e-mails, cards, gifts and visits. Your thoughtfulness and kindness mean so much to us during this prolonged struggle.

I started physical therapy (PT) this week, about two and a half weeks after the surgery. Mostly, the goal is to keep good range of motion going in the shoulder and to help with some of the nerve damage from the surgery. I actually came out of the surgery better than the surgeon anticipated. During my 1 week surgical follow-up visit, he was checking the strength of some muscles. He seemed genuinely surprised that I had any use of some muscles commenting that he was sure that he had removed the nerve that went to that muscle. But it still worked. Good for me. Anyway, I was doing pretty good until the PT started. Now, I am pretty darn sore.

Sessions start with a massage first. The therapist, Dr. Howard Knudsen, uses some tools that he says were developed by an orthopedic surgeon. He uses these tools on the skin with cocoa-butter, rubbing back and forth. He says that this increases circulation to the skin and muscles underneath. He is focusing on the areas that are sore mostly. It makes some interesting looking skin for a few days after.

Most of my soreness isn't associated with the surgical site, but rather in my upper right arm. I have complete numbness above the incision through the arm pit and the underside of my upper arm. I mean it is really dead. Can't feel a thing. But, from the area of the upper arm moving toward my elbow, the felling comes back and there is one area about the size of a silver dollar that is really sore. It feels like a really bad sunburn when it is touched. There are a couple of other areas that are sore too and he works them all over.

He does tome range of motion stuff with my shoulder and then finally has me use a weighted swivel devise that works my rotator cuff. Needless to day. I can feel all of it.

Monday, I will head back up to the cancer hospital for infusion of more chemotherapy drugs. This is a five day admission, just like my previous two times. The drugs run into the central line in my chest (it is the white thing dangling from my chest on the second to the last picture - it's been in me since February) 24 hours a day for the five days they keep me there. Then I return at three week intervals to do it all over again. My hair has just started getting long enough to comb again. Three weeks from now, I probably won't have any again. Oh my vanity!

God bless you all. Thank you so much for your prayers. We need them and so appreciate them.

Jim and Family

Metastatic Cancer

Hi everyone! Just an update from yesterday's posting. I obtained a copy of the CT scan report. Essentially, it shows that while I was being treated with radiation (focused on the primary tumor), the cancer in my lungs has continued to grow. As I stated yesterday, I'll be going into the cancer hospital for aggressive chemotherapy starting on August 4th, 5 days at a time every three weeks. This is what I have feared most. I don't like feeling sick and I didn't like how I felt last time when they did this chemotherapy. At least, I know what to expect this time. So much for my hair growing back.

Here is the technical part of the CT scan report dealing with my lungs, for anyone interested:

Again demonstrated are innumerable soft tissue densities: Nodules
scattered randomly throughout both lungs. These are increased in size
and number when compared to the prior examination. There is an 18 mm x
21 mm right upper lobe subpleural nodule noted on image 15 which
measure 13 mm by 14 mm on the prior study. At 18 mm in diameter left
upper lobe of subpleural pulmonary nodule on image 15 measured 5 mm
previously. There is a lingular pulmonary nodule measuring 12 mm in
diameter on axial image 26 which measures 6 mm previously. There is a
right middle lobe pulmonary nodule on axial image 36 which measures 10
mm in diameter on today's study, which was not well seen on the prior
study. A 10 mm in diameter left lower lobe nodule on axial image 55
measured 4 mm previously. Innumerable other smaller nodules
demonstrate interval increase in size or interval development compared
to prior study. This no evidence of pneumothorax. There is no
effusion.

Again, I can only repay your kindness and prayers with thanks. I do thank everyone for their love.

Jim

Hi everybody. We are most thankful to everyone for their continued prayers and well wishes. Thank you so much.

My daughter, her husband and their two children brought me a wonderful bear while I was in the hospital recovering from the surgery. It is absolutely amazing. Watch the video above to see what I am talking about.

I had my appointments at the hospital today (surgeon and oncologist). A CT scan was done of my chest, but official results weren't available at the time of the doctor's appointment. However, they did say that from their viewing of it that there didn't appear to be any new lesions and that the previous lesions hadn't grown very much. That sounds great to me.

The surgery appears to have been very successful. The pathology report indicates that all surgical margins were clear of cancer all be it by 1mm in places. The surgeon explained that to get the preferred 3cm margins in this surgery, my entire right arm and the right side of my chest wall would have to have been removed. That would have been a very drastic procedure and difficult to survive. He feels that the fact that I still have a functional arm and the surgical margins are clear is a wonderful achievement given the circumstances.

We now are facing more chemotherapy to go after the cancer in my lungs. It will be the same as before. Hospital admission for 5 days of continuous infusion every three weeks for a total of four sessions. After the second session, they will do another chest CT to see what the lesions are doing.

We are looking forward to getting all of this over with. Your continued prayers, kind thoughts and support in so many ways is sincerely appreciated.

Jim & Patti.

Post Op Recovery #2

Once again I cannot effectively express my most sincere thanks and appreciation to everyone for their kind thoughts, calls, notes and comments. We so appreciate the friendship, associations and most of all prayers.

I was able to come home on Saturday evening. We arrived here at about 5:00 p.m. I climbed into my recliner and was very pleased to be somewhere comfortable. There aren't very many (actually none) comfortable chairs at the hospital. My back was bothering me something awful by the time we left there.

Sunday was uneventful at home. Resting and watching some good old movies on the TV with my sweetheart and seeing a few visitors that came by the house. Yesterday, was much harder. I was very tired. So tired in fact that I decided to go to a local hospital and have my blood checked. You see, my HCT (hematocrit) had dropped on Friday to 29 and the surgical team had wanted to give me a blood transfusion. I asked them to wait and when they checked my blood later in the afternoon, it had increased to 30.4. However, Saturday morning, it was down again to 29.1 and they offered a transfusion again. I declined and asked them to recheck the level again later. It was up to 29.9 so they let me go home. My fear yesterday was that it was way down and that I had sabotaged myself by not having the transfusion then. Fortunately, the level had improved to 34, so it wasn't that that was making me feel so punk.

For the most part, my arm was giving me fits. From my shoulder to my wrist, it felt as if my arm had been beaten with a baseball bat. Heat, position, narcotics, nothing seemed to help. It was just plain uncomfortable all day long.

Since the surgery, I have had a drain in my wound. Today, I was able to have it removed along with all the bandaging that had been in place since the hospital. Imagine, large, bulky mass of of gauze covered by adhesive tape. Once all of this was removed, my arm has felt much, much better. I think all of the gauze was pushing on a nerve or something. I am glad it is gone. I am still covered in steri-strips from stem to stern and all my skin sticks to it's self from the soaps and stuff they used during surgery. But I do feel better.

OK - HERE IS THE GROSS PART. IF YOU DON'T WANT TO SEE GROSS PICTURES, STOP NOW. PROCEED AT YOUR OWN RISK.




This is at the beginning of surgery. I am unconscious (thankfully) and the OR team is preparing my skin with antiseptic. You can see the mass of the tumor kind of hanging there in the armpit area.







This at the point in the surgery when they removed the tumor (in surgeon's hands). You can see the big hole it came from and the position my arm was in for over 3 hours. No wonder it hurts!










Here is a shot of my armpit with all the bandage material and the drain hanging out of it.





















The bandage actually came off pretty well. The tape really hurt. You can see the steri-strips over the incision. The keep the skin together without a lot of stitches that would have to be taken out otherwise. In order for them to stick, the skin is covered with glue. You can also see the central IV line that I still have in my chest. It has been there since February 29th, four and a half months.














Here, the bandage is off. The drain is at the back and my skin is sticking. Yuck.












Cutting the stitch that holds the drain in place then yank, out it came and it didn't really hurt. Dr. Harline (my family practice supervising physician) was kind enough to do this for me. He said about 8 inches of drain was inside me. Sorry, I didn't get a picture of that.






And finally, here is a shot of the entire incision, about 23 cm when we measured it in clinic today. Again, you can see my skin sticking together. There is no armpit hair. I haven't had any there since the chemo. Radiation treatments must have had something to do with that too. I wonder if I will ever get any hair back there.

So, that is about it. Patti and I are scheduled to meet with the surgeon and the oncologist next Monday. I have a chest CT scheduled prior to those appointments. I am hoping for good findings and praying for a miracle for the lungs. The chemo treatments I already had were supposed to be the best there is for sarcoma and that is when it spread from my primary tumor to my lungs and spine. So, it will be interesting to see what they have planned next.

God bless you all. Thank you for your prayers.

Jim & Patti