OK I'm a Procrastinator

Some people seem to think that if I haven't posted anything recently something must be wrong. I suppose that's logical but most of these people should know what a procrastinator I am. It takes about 7 blogless days before I start to get comments. If my mother was reading them it would be another story. I started the blog to keep friends and family informed so we wouldn't have to keep repeating the same information. Its been 12 days now so I'm falling down on the job.

Christmas was great. Nathan, Tina and the gang came here from NC on Saturday 12/20. Tina and the kids divided their time between her folks and us. Nathan stayed with us most of the time and he was a Godsend. He handled the snow blowing and shoveling as well as helping Lois with housework. He also eliminated some items on my honey-do list like installing a new toilet.

Todd, Lily and the boys came Christmas morning and stayed until Sunday. Matt, Nick and Will were here Saturday and Sunday and Mary was here most of the time with her siblings. They all pitched in and made it a wonderful holiday. (There was a period in early November when I thought I might not last till Christmas)

The picture shows 6 of our 8 grandchildren. Joe and Oscar (sleeping) are missing.

My breathing has been good (w/o oxygen) but I noticed that it was starting downhill again even after being drained. (180ml on 12/22 - 45ml/day, 130ml on 12/29 - 19ml/day. The fluid is now clearer and orange in color)

My blood tests (12/23 & 12/30) are still in good shape.

Yesterday (12/30) we got the results of the CT scan and it showed that the tumors have been reduced in size indicating that the chemo is working. The scan also showed a white substance on my lungs (right and left) that was not related to the cancer. I could be from an infection like bronchitis or pneumonia although I'm not running a fever. This might be the cause of my breathing loss. To play safe I was started on an antibiotic ( Levaquin 500mg for bacterial infections).

I had my 3rd of 6 chemo treatments yesterday and Avastin (the tumor specific drug) was added to the group. It took 7 hours to administer the 3 drugs.

HAPPY NEW YEAR.

Catch Up 3

I'm really starting to slip (blog wise) now. I haven't posted anything recently because things are becoming pretty routine and seem hardly worth writing about. I can't believe I haven't posted anything since last Saturday. Now I'm to the point where I can't remember what happened earlier this week.

Saturday 12/13
We drained 230ml. That's 3 days worth or 77ml/day.

Tuesday 12/16
Went to the clinic for my weekly blood test and everything looked good.
We started on our way to Chicago to have dinner with Lois's siblings for her birthday. It was cancelled at the last minute because of the snow storm (about 4").

Thursday 12/18
After 4 1/2 days we drained another 230ml (51ml/day).
Went to a follow-up appointment with Dr. Haasler, the surgeon who installed the drainage catheter. He was very pleased with my progress. He showed us my latest chest x-ray compared to one taken the day the drain tube was installed. My right lung was then restricted to about 30% of the capacity shown in the new x-ray.
I don't have to see Dr. Hassler again until the flow stops and the catheter is ready come out.

This morning we had another snowstorm (12") and I had an appointment for a CT Scan at 8:30 AM. I ended up getting the car stuck at the end of the driveway. Lois and the kid next door shoveled it out. We did make it to the hospital on time.

Things have really been great:
My breathing is very good (without oxygen) and hasn't been this good since, at least mid-september.
My hair has stopped falling out and I still have a thin layer left.
I've been able to tolerate the chemo very well without most of the usual side effects.
The pain meds are doing their job.
I keep thinking that this might be like a car, or computer, that runs great right before it fails.

Catch Up 2

Wednesday 12/10
Went to the clinic for another Neulasta 6 shot to build up my white blood cells. We also did another drainage procedure and only withdrew 120ml again and this was over a 2 day period. It looks like the fluid production has almost stopped (and I just ordered, and received, 10 more drainage kits.). We'll try the procedure again in 3 days (Saturday 12/13).

Thursday 12/11
Some of the chemo side effects have kicked in - tired, achy, chills etc. I spent most of the day napping.

Friday 12/12
In better shape but some of the side effects still hanging on. Todd, Lily and the boys are here. They are going to prepare a meal, on Saturday, for Lois's birthday (12/16). Gnocchi with gorganzola cream sauce and a lamb roast will be on the menu. I can't wait. We went to dinner at the local diner and I handled it well but would have been more comfortable staying home.

Saturday 12/13
In much better shape today. Its been a week now and still haven't used oxygen and have had no breathing problems.

Chemotherapy 2

Yesterday, Monday 12/8, was a very good day. I had no breathing problems and was able to do a few things around the house like repair broken Christmas decorations and ornaments, straighten up the kitchen and clearing a plugged humidifier line. Still haven't used any oxygen. We did the drainage procedure in the evening and withdrew only 120ml (0.12 liter) before the flow started sputtering. The fluid was darker and thicker - resembling blood. (Has the fluid build-up stopped?) We won't try again until Wednesday 12/10.

I had my second chemo treatment today and it went without any apparent problems. My blood tests also were within an acceptable range.

We talked to Dr. Haider and he thought I was doing well. At one point he was considering starting the Avastin next week. He then decided to wait until the next scheduled treatment, 12/30, and including it along with the other drugs. He doesn't seem to be too excited about the drainage catheter. He said he will probably want to have it taken out in a few months. He might be worried about the long term effects of having the catheter in place. We'll see.

Drain Works

The blog has fallen behind a bit so here's a brief rundown of the last 4 days:

Thursday 12/4
Went to meet Dr. Haasler and his associates. They checked me out and we went through the events leading up to this surgery. They also summarized what to expect before, during and after the procedure. Dr. Haasler seems like a nice guy.

Friday 12/5
Arrived at the hospital at 10:15. Had another chest x-ray and EKG along with filling out all the required forms. (How many times do you have to tell them about your allergies, past surgeries, current medication etc. I'm all in favor of on-line medical histories.) The catheter was installed at about 2PM and it only took about 20 minutes. The doctor said all went well and he drained 1 liter leaving some behind for some hands-on learning. My night nurse, Cora, walked me through the procedure, which is pretty simple, and I drained another 1/2 liter.

Saturday 12/6
Most of the day was spent waiting for paperwork to be completed so we could go home. I did get another chest x-ray and I performed another drainage procedure under the watchful eye of Lois and 2 day nurses. The nurses did not have much experience with the procedure (I think they watched the video just before assisting me). It was like trying to work with Laurel and Hardy. I did manage to withdraw another liter. (The reason that the drainage quantities are multiples of 1/2 liter is because that's how much each bottle holds).

We didn't get out of the hospital until after 3PM. We stopped at Farm & Fleet on the way home to pick up a few items. Because they didn't have an available wheel chair I ended up walking through the store with my portable oxygen bottle. My breathing rate increased a little but it wasn't an S.O.B. episode. After we got back in the car I discovered that I didn't have the oxygen turned on. Wow, this was major progress. At that point I decided to go without oxygen for as long as I could. I didn't use any during the rest of the day or when I slept. In fact, Lois and I slept together, in our bedroom, for the first time in weeks.

Sunday 12/7
This morning, like an expert, Lois did the draining procedure and collected 1 liter. We did it again this evening and got .93 liters. We stopped when the flow was sputtering and I started feeling a pain in my shoulder. The pleural cavity was essentially empty. (4.4 liters in 3 days). From this point we can determine what the buildup is each day.

The hair is really falling out now - I should be bald in a few more days. Still haven't used any oxygen

Drain System Go

Had my blood tested yesterday and all the test results were good. I talked to Dr. Haider about the drain tube procedure. He said he would OK it if they used the smaller Pleurx catheter and if it was installed before my next chemo treatment (Tuesday 12/9).

The surgeon, Dr. Haasler, agreed. The procedure is set up for Friday 12/5 at 10:15AM. I was originally told that it would be an outpatient procedure but now they want me to stay overnight in the hospital to double check it.

We found the website for the Pleurx catheter and on it they had a video on how to perform the drainage procedure. (Its amazing what you can find on the Internet). All of the necessary components are included in a sterile prepackaged kit. I think Lois feels a little better about having to do this but she's still concerned about infection. A visiting nurse will be coming to the house to walk us through it

New Doc

Got a call from Dr. George Haasler's office this morning. He is the thoracic surgeon that Dr. Mariani contacted. They wanted to set up an appointment to discuss the installation of a pleural drain catheter. I now have an appointment with him on Thursday at Froedtert & Medical College of Wisconsin in Milwaukee. I haven't talked to Dr. Haider about this yet but I'm going to his office for a blood test this afternoon and will see him then. I won't proceed without his OK.

We had about 3" of snow last night and Lois got to use the snow blower for the first time. On Sunday Todd showed her how to operate it. She did a great job - much better than my first attempt.

After my shower this morning there was a handful of hair on the tub drain. Its starting.

Thanksgiving

If I had to describe the Thanksgiving weekend in one word it would be "GREAT". My breathing and stamina were better than they've been in a long time. Maybe since early October. It wasn't until tonight (4 days after being drained) that the S.O.B. became noticeable again.

This couldn't have happened at a better time. I was able to spend the time with my kids and grandkids rather than being pinned to the recliner all weekend. Although we had a slight dusting of snow the weather was nice enough for the kids to blow off some steam outside. Will, Oscar, Joe, Nick and Felix looked like a ragtag bunch of explorers out to conquer the wilderness (well maybe just the backyard).

On Friday I walked, without oxygen, down to the mailbox to get the newspaper. I would guess the round trip distance to be about 200feet. I was a little out of breath but it didn't take very long to recover without even hitting the oxygen.

Usually, when I'm short of breath my recovery takes about a minute of breathing with oxygen before my respiration rate drops down to normal. One possible way to measure my stamina would be to estimate how far I can walk before I need a one minute recovery period. There have been times when that distance was less than 10 ft.

More Juice (Again)

Again my breathing was better, this morning, than expected. It must be the inhaler that's doing it.

As planned I had the chest x-rays this morning. They showed a fluid level worth draining. Dr Mariani withdrew 2.5 liters - that's in one week.

He told me about a procedure that involves placing a stent in the bronchial tube to the right lung He said he remembered that area as being restricted when he did the Bronchoscopy. The stent would open up the airway and allow the lung to expand more easily. This would reduce the expansion of the pleural space and reduce the amount of fluid it aspirated. He was going to talk to a thoracic surgeon about it and call me.

Mariani called me after talking to the surgeon who, instead, recommended installing a drain tube/catheter that would allow me to drain the fluid myself. It would be installed as an outpatient procedure. The catheter would remain in place until the chemo stopped the fluid production. It sure sounds good to me. It should also allow me to start getting the Avastin during chemo.

With the fluid drained my breathing is much better and I have much more stamina. I know it won't last but at least I'll be in good shape for Thanksgiving. Matt and his family, Todd and his family, Mary, Ellie, John and Sarah will all be here to celebrate with us. I'm really looking forward to it, particularly enjoying 5 of my grandsons.

Blood Test

Went to have my blood tested at the oncology place. This will be a weekly appointment as long as I'm undergoing chemo. The test results were "good". The chemo is working. They know this because my red blood cell count has decreased. The drugs attack all multiplying cells including good ones. Other test results were within the acceptable range.

The inhaler (Advair HFA 45/21) that Dr. Mariani prescribed yesterday appears to be working. The stuff in my lungs seems to be breaking up. This morning I had more stamina than I've had recently. I guess I was a little too active because this afternoon, before my blood test, the S.O.B. was back.

Another Appointment

Had a visit with Dr. Mariani today. It was a follow-up to the Bronchoscopy he did a few weeks ago. Its a good thing they called because I forgot we made it. My breathing is slowly going downhill again and I might need another drainage before the Thanksgiving weekend. The plan now is to have an x-ray on Wednesday morning and have my level checked. If its high I'll get the procedure.

In addition to the excess pleural fluid, I think the shortness of breath might also be due to congestion. It just feels like my lungs are full of something. The Dr. prescribed a steroid inhaler to loosen things up if that's the problem. (pretty soon I'll be on more meds than my Mom was)

I'm not sure how to do this blog thing. I probably should have read some before I started this. I think some people are expecting me to write something every day. I just don't have that much to say especially on days that are uneventful.

I guess I should also mention the "broken" car. A shot of WD-40 into the lock solved the problem. It was a tip I found on the Internet.

More Juice

I had a good night last night. I slept soundly, for 5 hours lying down. That hasn't happened in a while. I'm assuming it was the chemo treatment. Its not supposed to work that fast. I even had energy when I got up. I worked on the computer trying to view the scans I got from the doctor. The viewing software was included with the files.

I was tempted to call off the thoracentesis but after I showered and dressed I was winded again. I didn't cancel.

We went to KMH again for the procedure and Dr. Mariani withdrew 2 more liters. He told me has a case very similar to mine and the pleural effusion was stopped with chemotherapy. The man has gone 3 months now without a drainage.

After killing a few hours eating lunch and visiting Walmart we went to my 2:00 apointment with Dr. Jandali. He checked out the incision for the PowerPort and gave his OK. (The needle doesn't latch onto the Power Port - it has to be taped in place)

Next was a 3:00 appointment at the Oncology place where I got a shot of Neulasta 6 - its supposed to increase the white blood cell count which will be diminished by the chemo.

Next we found out that our car wouldn't start. The ignition key wouldn't turn We tried working the steering wheel and shift lever but couldn't get it to work. We ended up calling Georgette to take us home.

Poor Lois has to spend her time driving me around and sitting in waiting rooms. Now she has to deal with a broken car.

Chemotherapy

We met with Dr. Haider this morning before the treatments. I told him that I had shortness of breath to the point where I could not lay down to sleep last night.

He said that, at least initially, we should avoid doing a pleurodesis which is the procedure that seals off the pleural cavity. It is an invasive procedure that could have complications and will delay the start of chemotherapy. The Avastin, in particular, has a tendency to promote bleeding.

He said that the chemotherapy should slow or stop the fluid build-up. He would prefer that I not even have the pleurocenthesis. I told him I didn't think the I could tolerate anymore breathing decrease. We agreed that we would start the first 2 medications (Taxol and Carboplatin) and I would get the pleurocentesis done ASAP (tomorrow). If after 2 chemo treatments I don't get relief. We will go ahead with the pleurodesis. If the S.O.B is lessened we will stsrt the Avastin.

Dr. Haider showed me the PET scan and the cancer. There is more than I expected. The tumors look more like small nuggets than spots. There is a cluster in the top of the pleural cavity that is just below my right shoulder, which is painful. He gave me the hardcopy reports of the scans as well as the digital files.

Other than nodding off I had no reaction during he chemotherapy administration. The nine chairs in the treatment room were almost always filled with patients ranging from teens to 80s. A few more men than women. Some were there for less than an hour. I was there the whole day.

Mary Visit

Mary dropped by today and Lois conned her into taking me to St. Cats for another chest x-ray. This set is for Dr. Haider and my chemo appointment tomorrow. My breathing is going downhill rapidly. I have S.O.B.(shortness of breath)again even with on oxygen.

Todd Visit

Todd and Felix came down from Madison last night. Todd spent the day doing projects around the house - mostly winterizing kind of stuff. Felix spent the time delighting his grandparents. He sure can brighten a person's mood. That's, of course, an unbiased opinion.

Call from Dr. Haider

Dr. Haider called today. He wanted to ask me if I was willing to be part of a clinical trial. The trial would be the same as the planned treatment except that a trial representative would observe the therapy, 6 physicians would review the data and Avastin would be continued beyond the first six treatments. I said OK. (They don't usually ask hopeless cases to be part of such studies)

I asked about the bone scan & MRI results. He said he hadn't seen the scans but the preliminary reports indicated that they were clear. The spot on my rib seen on the PET scan also showed up on the bone scan. He said he wasn't worried about it.

Cousin Lunch

Georgette, Michael, Lois and I went to our monthly cousin lunch. Bob, Kay, Ron, Debbie and Chuck were also there. It was the first time I've seen my siblings since the diagnosis. It was also the first time I ventured into public dragging around an oxygen tank. All went well. We had a good time

Power Port

At Kenosha Memorial Hospital at 6AM again and was prepped for the 8AM port insertion. The "Power Port" was installed on my left side below my shoulder blade. It had a catheter that ran under the skin to a vein on the right side of my neck. All went well as long as Lois didn't pat (unintentionally) me on the chest

The port is an injection site that is below the skin and can be connected to an IV set using a special needle that locks in place somehow. I've got to see it work.

We went to Dr. Mariani's office to have my blood oxygen retested and get an O2 prescription that Medicare would accept.

Bone Scan & MRI

At 8:00AM I received a shot of the radio-active solution used for bone scans. Because there is a 3 hour wait between shot and scan we scheduled the brain MRI during this period. Both scans were uneventful. I never realized how noisy the MRI procedure is.

E.R. Visit

We left Todd's early today because I was having shortness of breath problems. Just standing up and walking a few steps to the bathroom would leave me huffing and puffing.

Things didn't improve after we got home so we decided to go to the Emergency Room. They started out by giving me a nebulizer w/bronchodialator treatment. It helped a little but not much

An x-ray showed that my right pleural space was filled with fluid. Dr. Habel , one of Dr. Mariani's partners, happened to be in the hospital and he performed a thoracentesis and withdrew 2 liters of fluid (red). He recommended a surgical procedure that would seal the pleural space and prevent fluid accumulation.

Because my blood oxygen level was below 90% I met Medicare's requirements for having my own O2 supply. The prescription, however could not originate from an emergency room.

Knowing that my doctor was Mariani, the oxygen supplier set me up with 2 portable units and an oxygen concentrator for the house. He would wait for the Rx.

To Madison

Yesterday we decided to get away from it all and go to Madison to see Todd, Lily and the boys. We took off soon after Lois's appointment with Dr. Akgulian. She wanted to get some anti-anxiety pills because she's really been wired lately and unable to sleep.

Because of my breathing problems and chest pains I haven't been able to do any work around the house. (At least now I have an excuse). Lois has picked up the slack and has completed my tasks that I wouldn't have even started yet. I don't know what I would do without her.

Lois, Lily and Felix were out bumming today. Todd was in the kitchen making Lasagna from scratch (even the ricotta). I was just laying around the house reading and enjoying my Felix and Oscar.

Chemo Class

As part of the program, Lois and I attended a class on chemotherapy. Anita, a teaching nurse, has the job of instructing both patients and staff at each of the Oncology Alliance facilities.

She went over each of the medications, listing their function and possible side effects. We were given literature on all of the potential side effects. Each covering description, causes, symptoms and treatment.

The treatment room has about a dozen recliners arranged in a circle. Each has its own IV pump. Books, DVDs, audio books and other sources of entertainment are available to help pass the time. (My first treatment will last about 9 hours).

Its not something I'm looking forward to.

Meet Dr. Haider

We met with Dr. Haider today. He started by giving us his background both personal and professional. He then reviewed my case and told us what to expect.

Surgery is not an option because the cancer is in the pleural fluid. Instead of a mass it is many small spots on the outside surface of the lung. For the same reason radiation won't work. The only choice, initially, is chemotherapy. The proposed treatment would include 3 drugs administered 6 times at 21 day intervals.

The drugs are:
Paclitaxel (Taxol): 1st infusion - 4 hours, next infusions - 3 hours
Carboplatin: infusion - 1 hour
Avastin (Bevacizumab): 1st infusion 90 minutes, next infusions - 30 minutes. Avastin is a newer drug that has gotten a lot of press lately. It apparently targets the tumor cutting off its blood supply
The first infusions are slower to see if reactions are going to occur. The treatments are scheduled to begin on Tuesday 11/18.

He also wrote prescriptions for pain medication. They included a Fentanyl Patch, Oxycodone Capsules and Celebrex.

And, of course, some more procedures were called for: a bone scan, MRI/Brain scan and insertion of a medication port.

I felt comfortable with the doctor and was impressed by the Oncology Alliance operation. (www.oncologyalliance.com)

Talk to Dr. Akgulian

I spent many hours on the Internet researching lung cancer and oncologists. There are only about 2 dozen oncologists in the state of Wisconsin that specialize in lung cancer. One of them is in Kenosha, part-time, and is part of a group called Oncology Alliance. His name is Dr. Syed N. Haider. Per the Internet he had good credentials and recommendations. He was also Dr. Akgulian's choice.

I figured that I would be needing surgery and the choice of a surgeon was more critical than that of an oncologist.

Dr. Akgulian also told me the name of the cancer is adenocarcinoma. It is a non-small cell lung cancer and is the most common for both smokers and non-smokers.

Call from Dr. Mariani

This afternoon Dr. Mariani called again. He said that after checking several more "cuts" of the pleural fluid the pathologist found some malignant cells (shit, shit, shit). He said he would cancel the bone scan. He was very apologetic. I should have told him that he could call our kids.

He also said that Dr. Akgulian would call me about oncologists.

PETScan

The PET scan equipment is a mobile unit about the size of a semi-trailer. It is at St. Catherine's 2 days every week. In it, I had to sit for 45 min after being injected with a radio active marker. The scan was similar to a CT scan, which involves lying on a table that slides into and out of a tunnel. I slept through most of the procedure.

Later in the afternoon Dr. Mariani called and said the PET scan only showed a spot on one rib and he would schedule a bone scan to find out more about it. He also said the lung tissue biopsies and PAPP smear were clear and the pleural fluid had some abnormal, but benign, cells (fantastic).

YIPEE! We immediately let the kids know the good news.

Bronchoscopy

At Kenosha Memorial Hospital at 6:00AM for the Bronchoscopy and was prepped for the 8:00AM prodedure. The Bronchoscope is a thin flexible tube that is inserted into the lung by way of a nostril. The drug used to dialate the nostrils is actually cocaine. So now I'm a coke head too. During the procedure the Dr. took 2 lung samples for a biopsy and also did a PAPP smear (no comment).

Dr. Mariani then performed the thoracentesis (drainage of pleural space). A needle was inserted through my back into the pleural cavity. Tubing from the needle was then connected to a vacuum container. About 1/4 liter of red fluid was withdrawn. He said that the portion of the lung, that he could see, was clear and that I should have a PET scan. He also said the results from the pathologist would not be ready until Tuesday 10/28. (More waiting)

Georgette said that when Tom had a thoracentesis done the fluid looked like beer.

Call from Dr. Mariana

After spending the weekend biting our nails we finally got the call from Dr Mariani.
He said there was a spot on my right lung (shit). We scheduled a Bronchoscopy and drainage of the pleural cavity for Friday 10/24.

Dr. Visit

I went to see Dr. Akgulian, our family doctor, for a check-up and let him know that Lois thought I might have pleuresy. I then got a chest x-ray and the radiologist, after seeing it, ordered a CT Scan (oh-oh)for tomorrow. Akgulian called me and said that the plueresy diagnosis was correct - the pleural cavity did have fluid in it. He also said he was sending my results to Dr. Mariani a pulmonologist (oh-oh).

Lois and I decided we would prepare for the worst and hope for the best.

The Beginning

I guess I'll never know when the game began. It could have been 2 months ago or 5 years ago. At some point a cell in my lung decided that it wanted to be different from its colleagues and chose to mutate. The number of its descendants reached the point where they were becoming a nuisance. The first symptom was a slight pain in my right shoulder every time I would inhale quickly.

The roller coaster ride of tests and procedures began then. We've tried to keep friends and family informed of the latest results but sometimes it becomes a hassle. Lily suggested that we start a blog to keep people updated.So here it is

Some of the posts are back dated to keep things in chronological order.