Bronchoscopy

Wednesday I had a bronchoscopy. This involves examining my airway with a scope. The reason was to confirm and evaluate the suspected lesion that was related to the clot. This time I was well medicated and went through the entire process smoothly. As hard as it was for both of us, Ken could not be there. He was in New Jersey. But, Dr B felt it had to be done right away.

My sister Kathy took me to the appointment at UCSD in Hillcrest arriving at about 10:30. Like with most of the days Ken and I go to my appointments, it involved a lot of waiting. It was a lot more than expected since I’d been fit into their schedule on very short notice. The wait was 3 hours to begin the procedure. Afterwards, still groggy on drugs, Kathy drove me to the cancer center for my post-chemo injection. It was after 5 when we headed back toward home. Kathy missed an appointment of her own. And because we did not anticipate how much time was needed and did not pre-pay enough, we got a parking ticket  at UCSD Hillcrest. Kathy offered to try fight it. I don’t know how she made out.

The lesion was confirmed. It was small but deep and was formed as chemo killed cancer cells opening up the wound. There was debate over whether or not to go back in to seal it up as best as possible. My clotting rate was evaluated again. Eventually, the decision was to wait – provided the clot did not break off again. My follow-up procedure was postponed indefinitely. Yeah!

Other than routine exams, I get a break until Tuesday the 26th when my next chemo is scheduled. In the meantime… there was lots of catching up to do at work and long hours. By the time I get home each night I have very little energy left.

Wednesday I got stuck in a huge traffic jam. Instead of the normal 40-45 minutes, it took me about 2 hours to get home that evening. Ken is so patient as I rest. Sometimes it helps to get off my feet for several minutes. Often I eventually fall asleep on the couch after dinner. Sometimes, like Wednesday, I surrender earlier and Ken tucks me in. He has many evenings alone reading and working on his emails. He often stays up later than he intends to and doesn’t get enough sleep.

 

CT Results and more…

My CT results were great – better than expected. The newer tumors have been reduced by about 50%. The primary one (and its newer “satellite” one) show lots of deterioration. They look like shells with the guts missing. The adjacent lymph node is swollen. But it’s only one. The others looked normal. It’s likely drainage of the dead cancer cells – a very good thing.

My blood counts were high enough to qualify me for chemo today as scheduled. It only ran about an a hour late. But that’s pretty good. It’s very good considering the nurses are now working with a new computer program and have a lot more entries to make.

There is something that might help my nail problems. The Taxotere (chemo) can make finger and toe nails swell and sometimes fall off. It’s called “clubbing” and can be caused by other things, too.

I’m having trouble with just one of my thumbs so far. The treatment involves wearing mittens lined with something like gel-pack or beads that hold cold (when frozen). Wearing them during the infusion can help. There have been clinical trials showing it’s effectiveness. I just have to see if I can get a pair and store them in the freezer at the infusion center while I wait for chemo. I have a few weeks to work on it. They make them for feet, too… if it comes to that.

The only bad news is I’ll going through another bronchoscopy… and soon. I coughed a blood clot yesterday. It may indicate a blood vessel in one of my bronchia has ruptured and may do so again. This can happen as cancer cells adjacent or attached to a vessel are damaged. It can be remedied, sealing it up using a laser. I am dreading the procedure. The last one was truly torture. Just discussing it with Dr B today brought me to tears. I hope to have the procedure done differently and with some sedatives. Sadly, Ken won’t be there to go to battle for me. He’s traveling for work. I will be prepared to walk out if need be and try the another pulmonologist.

Our friend, Steve, stepped in and spent the tedious day with me, picking me up at 8 and getting me home at about 5. We had a late lunch at Island’s before heading back to Ramona. Steve had just returned the evening before from a trip to the east coast. So in addition to having things to catch up on at home, he was suffering from jet lag.

 

TimeOut

I’ve been enjoying the break from chemo. It’s great having three weeks off between treatments. The side effects have been manageable. The typical nausea, fatigue, and funky taste buds which lessen each day. My fingertips have been extremely tender, but are also getting better.

Today I had my CT scan. Now comes the long wait for the results on Tuesday. That’s when I have my next appointment with Dr B and am scheduled for my next chemo.

 

Follow-Up

I took part of the day off and still feel guilty about it. Rather than risk the melt down I had last time after chemo, I took it easier today. Karen generously offered to drive me to my appointment for my injection and helped me get some errands done. It was a  very long haul for her. Santee to Ramona to Mission Valley via La Jolla (Cancer Center). Next she left me off at work for a few hours and headed to El Cajon for an appointment of hers, then back to Mission Valley. Last to the Cancer center for the appointment for my injection, scheduling my next appointments, etc, back to Ramona, then finally she headed home to Santee.

I now have my appointments for my next chemo on May 5. I will have a CT scan the prior Friday to get an idea of how effective the Taxotere’s been. I feel pretty positive about it based on how I feel. The occasional aches and pains in my chest are gone. 

Photo was taken via my Mac in the Cancer Center Lobby while waiting for chemo appt.

 

Tuesday’s Chemo

My appointment with Dr B was too early to have my lab results. If my numbers were low, Dr B wanted me to try another injection and wait another day. But definitely I was to get chemo this week. She didn’t like considering the possibility of me dropping out of the trial. Thankfully my numbers were up again and I got my chemo. So it didn’t come to that.

The chemo was not without the delays I often encounter. Ken was really tense the whole day. He had little of the immense patience he normally has with me and with this. It got worse as the day dragged on. I can attribute some of it to a lousy night’s sleep on his part. But, it seemed like a lot more than that. He’s overdue for a break from all of this.

 

Rollercoaster

On Friday morning I got the results from lab work the evening before. My counts were back up. So I don’t have to go through injections this weekend to prepare me for Tuesday’s chemo. I still have routine labs again on Monday. But, I think it will be a surprise if I don’t make it.

Saturday Ken and I went to select my wig and get it fitted. First we went to get my hair trimmed so it’s one length. It had been falling out in some places and growing in in others and was getting to be more than I could manage with a beret.

The wig is a different look for me – darker and longer. It’s a relief after the worsening hair issues, yet it’s not without some anxiety over how people will react to such a drastic change. Though everyone’s been pretty enthusiastic and supportive. It’s great not to be dodging mirrors all the time. I’m reluctant to take it off when I get home. I will have Ken to take a photo. Otherwise, I am sure some people won’t recognize me.

We spent Easter day in Indio with family. My sister, Norma, hosted the event. It was good to see everyone. But, several were missed that couldn’t make it due to work or travel. 

Monday my counts were down again! I have no idea why they would drop when they were improving on their own. I’ve been told there is nothing I can do about it. I am supposed to get chemo tomorrow regardless. I had an injection this evening and will go through another blood test in the morning. If too low tomorrow, it might disqualify me from the trial. I am part of the control group so it won’t change my treatment in anyway. But, it means I can’t help with the trial for a new treatment.

 

Numbers Down

My counts didn’t hold and were too low for chemo today. It’s been postponed a week. In the meantime my counts will be watched and I will go back on Neupegene if needed. More later.

 

Numbers are back up

My blood counts are backup – ahead of schedule. This is a relief. From here on I will get treatment (an injection) for my bone marrow a day after each chemo. The next one is next Tuesday. I plan to make time to rest this time. Last time it really knocked me down. Other side effects remain minimal – like nausea. No neuropathy yet. I had some last May, but it gradually went away.

The hair is falling out ahead of schedule. I was hoping to be an exception and keep what I have left or at least keep it a bit longer. It’s still a hard loss to face at times. I’ve already been been avoiding mirrors for a long time. I expect it will still be shocking for awhile and then I’ll get used to it. I cry when I think of seeing the look in Ken’s eyes when it does happen. He says it won’t matter – that we loves me. But, my bald head will be a constant reminder of the disease and difficult to hide. Don’t get me wrong – if I could trade my hair for my health, I would in a second.

I don’t expect it to grow back as long as I am on this treatment. I will continue on the chemo as long as it is effective, though I have no idea how long that might be. But it’s the best thing available now. Based on how I feel, I think it’s working. But, I won’t know how for sure or how well until I get a CT. Dr B hasn’t mentioned scheduling one yet. I think it is at least 3 weeks away and maybe 6. I

The earache is presumed to be due to TMJ. My dentist and an ENT doctor both advised me to get a night guard and see if it helps. At least it’s not getting worse. My throat and mouth are no longer sore. That is a big help. It seemed to make my ear worse. Oh now there’s a lovely picture… bald and wearing a night guard. : )

 

CheckUp

Dr B’s conclusion is the chemo did the damage to my throat and mouth. All should heal with time. Premeds and lots of fluids during treatment should avoid this for future chemos. Now it’s mostly a sore throat and sketchy voice. I’ve added another medication – a rinse to soothe and heal my mouth and throat. It’s nice to have something to help get me through the night.

Both the dentist and the ENT doctor independently think the ear/jaw issue is due to dental pressure  - TMJ of a muscular and tendon nature rather than typical bone and joint. They both recommended a night guard. It’s been a relief to know it’s nothing serious. The consensus is nice, too.

Tuesday’s blood test indicate I’m neutropenic again. Which means my white counts are dangerously low and I am at high risk for infection. I feel fine. I’m getting daily injections for a week to stimulate my bone marrow.

 

Back to the ER

Since Thursday I’d been getting progressively short of breath and having trouble talking. Late Friday afternoon I finally called Dr B’s nurse, Erin. I was told to come in for a chest xray to be sure I didn’t have pneumonia or some type of fluid buildup in my lungs. A PE was another concern. It was late in the day so the ER made the most sense. Carinda from work drove me there. Oddly, someone driving around a blind corner egged her car. Fortunately, it was just one. The guard at the hospital helped her clean it up and no damage was done. It was so strange.

Ken joined me within the hour. Blood tests and a chest xray didn’t give any clues. Next was an ultrasound to check the status of the blood clot in my neck. No significant change was found. Then the usual, at CT. By this time, it was down to a PE. But this wasn’t found either. Since everything serious had been eliminated, I was allowed to go home. The assumptions included: numerous small PE’s (which are not life-threatening), a lingering allergic reaction from Tuesday’s chemo, or maybe bronchitis. My oxygen levels were great – which was very reassuring.

In the meantime, I’ve been resting a lot. I’m feeling a bit better. But I am not sure how much of it is from rest or from actual improvement. My next appointment is Tuesday. If nothing worsens in the meantime, I’ll wait until then.