Tired, but well

Chemo was Tuesday. For the first time, no delays and we were out in record time. Our appt. with Dr B was at 8, followed by chemo, and we on our way home by 1:30. We stopped for a much needed and tasty lunch.

When we got home I was restless and didn’t rest like I should have. I am paying the price. I am tired, weak and a bit achy. My taste buds are off and my tongue feels sore and a bit swollen (as usual). But it’s nothing serious and should soon pass.

My next CT will be in about 3 weeks. As long as Taxotere continues to work and the side effects remain minimal, I expect to stay on it. I haven’t asked how long that normally is. But, Dr. B has assured me she is always planning a few steps ahead.

 

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.

 

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 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. : )

 

Chemo Day

Today was the first day of my new chemo treatment – my third line. Because I will not be getting a trial drug, I will get chemo just once every 3 weeks. Today was a long day but like many like it, we got through it. In addition to the blood tests, a visit with Dr. B, and the chemo, we squeezed in an ultrasound on my neck. The ultrasound was to better assess my blood clot and the neighboring veins. Results will likely be tomorrow. Aren’t computers great?

I didn’t get a lot of sleep last night because of pain from the clot. Eventually Ken stirred and asked what he could do. He got me a snack to settle my stomach and one of my pain pills. Within 30 minutes I was hard asleep. When the pain pills eventually wore off this afternoon, there was a break in the pain. This is a sign that the clot is noticeably dissolving. It should continue to do so as long as I don’t miss any more injections.

Now I need to brace myself for the likely fatigue and nausea. I should have my hair for about another 4 weeks. There are other side effects but they aren’t as likely. One day at a time.

 

Roll of the Dice

On Tuesday I learned that I won’t be getting the trial drug. I qualified for the trial but lost the toss for the new treatment. I will be in the control group. I will be getting the standard of care, Taxotere. I don’t know how many cycles. But, it’s two weeks on, then one week off.

This makes my trial results 50-50. I got it the last time and missed out this one. Once I start a program, I will be disqualified from others. Hopefully, this will be effective on it’s own. It will at least be good to be getting treatment again. I am getting an occasional cough. My chest pains and back aches are easing. My earache and headaches continue. I will go through another brain MRI. It been about 3 months since the last one. It would be nice to know what’s going on.

 

The Next Line

So much has changed since last Tuesday. So much it feels like it’s been weeks since we got the bad news.

I’d expected to get about another year on Tarceva. Time I’d begun to count on has been snatched away. It’s devastating. We’ve now been through this a few times but it doesn’t get much easier. Lots of tears. More uncertainty. Another crossroads.

Since getting the news, I’ve been either working late or exhausted or both. No opportunity to blog. And there have been the new pains. Because of severe back pains several days in a row, I had MRI of my spine last Saturday. But, the results weren’t definitive. That can happen with most of these tests from time to time.

Then over the weekend I started getting more intense chest pains. By Monday morning it was constant and I was referred to the ER. I doubted it could be a heart issue, but I have been on a lot of different drugs with various side effects. There was also pulmonary emboli to rule out. For this, I had another chest CT. No PE. But, there is further noticeable disease progression – and in just two weeks. Not good – but I guess not entirely unexpected. So it’s pain management for now. And wait. The day at the ER was exhausting and aggravating. It was the entire day! I felt ignored and forgotten much of the time. Ken would have come in an instant. But, I insisted he get through his meetings. We were in phone contact as much as possible which helped. But, I learned my lesson. I won’t go it alone again. 

Dr B is recommending my next line of treatment be Taxotere along with another trial drug. It doesn’t have a catchy name yet – just a designation of letters and numbers. To qualify, I have to wait 3 weeks from the time I stopped taking Tarceva. Three weeks without treatment. Three weeks allowing the cancer to progress. The hope is adding the trial drug will squeeze more success out of the treatment than without it.

To make chemo easier I will get a port implanted. This will make treatments, blood draws, and other tests (with IV contrast) much easier. I know it’s the right thing and I am ready for it. But it doesn’t mean I am looking forward to having a foreign object in my chest with a tube resting inside a major artery. The procedure will be done next week. Then, if all goes well, chemo starts on the 17th.

In the meantime, I had a bone scan. It was a routine follow-up to the trial I’d been on. Dr B thinks it might also give some insight into my chest pains. We’ll know tomorrow.