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)