Sooooo…….two weeks ago was either the worst week or second worst week I have had since I started this whole cancer adventure. It is in competition with my very first week of chemo.
During that very first week my fatigue was so bad I could stand up for only a couple of minutes at a time and there were periods that I didn’t have the energy to hold my head up.
Two weeks ago it was all about pain:
On Monday night, the 3rd day I was off the Capecitabine, just after I went to bed I got a terrible headache right at the site of the lesion on my skull. A couple of Tylenol solved the problem, I thought, and I went to sleep……to wake up Tuesday morning with major pain in my shoulder. And I mean MAJOR. I have wrecked my back before such that I could only stand for 30 seconds at a time and Tylenol 3 with codeine was useless, I know what pain can be like and my shoulder was at least that bad.
To make it even better I had evolved from T. rex arm to penguin flipper arm. At least I think that is evolution even though it is regression in mobility. There is so much fluid near my elbow I have about a 10 degree range of motion in my elbow. Yippee for me, my right arm is more useless than ever before and causing me more pain.
I figured out that if I sat one specific way, d it would vary every few hours, I had no pain. And if I couldn’t find a comfortable spot sitting it was time to lie down and find the one comfortable position. After Orchid was kind enough to sit on my shoulder a few times (the true helper she likes to be!) I figured out it was nerve pain and not some specific spot on my shoulder. I had a couple instances of pain radiating down my arm but it was primarily my shoulder.
On Wednesday I had my oncology appointment with a sub instead of my regular onc. I explained about the pain and he gave me a prescription for Nortriptyline which is an antidepressant but at low doses is very good for nerve pain. We also discussed when my symptoms started to get worse on the third day off but my side effects were manageable with the 16 days of pills. It was agreed we would do the 16 days on, 5 days off cycle again.
On the Thursday evening I started the Capecitabine pills again. Based on my last cycle it wasn’t until between days 7 and 8 that my symptoms began to abate, but that was after 14 days of pills. Hopefully they would kick in sooner this time as I had been on 16 days of pills.
Over the next couple of days my pain continued to get worse. It was getting more difficult to find the one comfortable position. Also, the pain was radiating down my arm quite frequently. All in all I was getting pretty miserable. Standing was pretty much unbearable and I spent a lot of time hunched over in an awkward position if I had to stand for more than a few seconds.
By Sunday I could no longer lie down so it was back to the couch to sleep. That did not bode well as Monday morning I had a brain MRI scheduled which means lying flat on my back. A side note, anyone that has not experienced an MRI, particularly a brain MRI should watch the show Bordertown on Netflix. And I am talking about the Finnish show not the original Canadian one or the animated one. In episode 1 or 2 the main character’s wife has a brain MRI done and it actually looks pretty accurate with the ear protection and the brace to lock your head in place. The sound was even correct just not as loud as real life even with the ear protection.
In preparation for the MRI I took a couple of Nortriptyline immediately after getting out of bed Monday morning and then just before Ian and I (with all the pain and limited motion in my arm I am currently unable to drive) left for the hospital I took a Percocet (acetaminophen + oxycodone, equal to about 10 milligrams of morphine) in the hopes that I could limit the pain while lying down during the scan.
That was a big fat no. I had a pillow to support my arm so everything was good for the first 30 seconds and then the pain started. The scan lasts somewhere between 10 and 20 minutes, I think, with a pause in the middle to get an iv and have the contrast dye injected. I spent the entire time having to shift my arm around about every 5-10 seconds. At the same time I had to keep my head perfectly still. I wasn’t sure I would make it through the entire scan when suddenly I felt the bed sliding out from the scanner…..done! I made it through.
When I got home from the scan I phoned the pain and symptom clinic. It was official, I needed stronger pain killers. And I remembered that the original horrid doctor there had talked about being able to drain my arm. I decided I would ask to have that done. Even if it only gave me a few hours of relief I was ready for anything. I didn’t really believe it was possible to drain the fluid so I tested it with one of my anticoagulant syringes. Sure enough, if I slid the needle in just under the skin lymph fluid slowly started to drip out. Unfortunately it is only a 25 gauge needle so it was a very small hole but fluid dripped out for the next day. Overall it wasn’t much fluid, but I did notice the swelling in my fingers decreased a little bit. Any decrease is an improvement.
Monday night was day 5 of the Capecitabine pills. I was able to sleep without any painkillers and at some point during the night I felt okay enough that I moved from the couch to bed. Yay.
When I woke up Tuesday morning I had a little bit of tingling in my right arm, sort like my arm had been asleep and circulation was being restored. Over the next hour the tingling got stronger and stronger to the point it was almost as painful as the other nerve pain had been. Two Nortriptyline and a half hour later and the pain was under control and I could get out of bed.
The rest of the day was alright, the shoulder nerve pain was gone. I only had the pain and discomfort of my extra heavy useless arm to deal with. It starts pulling on my shoulder as soon as I stand up so the only comfort I get I sitting down, preferably with a pillow supporting my arm so there is no strain on my shoulder.
Wednesday Mom took me to the pain and symptom clinic. It was almost an hour long appointment and it didn’t do quite as well as I hoped. I saw the doctor that I like so I asked about getting my arm drained and he told me that it really wouldn’t be as much of a miracle as I would likely want it to be. I ended up coming out of the appointment with a prescription for diuretics and potassium pills and instructions to take 2 Nortriptyline before bed. Felt like a typical pill pusher doc. Let’s take the pill option 1st and wait and see. I tried arguing for any drainage but only got the agreement that if things don’t start improving in the next 3 weeks and I need more intense painkillers then he would try draining my arm. Grrrrrrrrrrrrrrrrrrrrrrrrrrrr
Now it is Saturday afternoon. Since Wednesday the Capecitabine has continued to do its thing so ever so glacially but I have noticed improvements. Up to now, with all the fluid and random growths my upper arm, shoulder, and the front of my chest have felt like rocks. The skin is stretched so tight that there is no movement of the skin if it is rubbed. In the last day the chest area has loosened and this morning I noticed a little loosening on the top of my shoulder. If things continue to loosen then the fluid should hopefully start to drain.
I have also been getting headaches centered on the lesion on my skull with some pain radiating up the facial nerves that have been affected by the tumour. Signs of cancer cells dying and the nerves beginning to fire? Please let it be so. There have also been a couple instances that my hearing, while not great, seems to improve slightly in my right ear but that has always been temporary. The few skin lesions I have are improving too. And I am pretty sure the lump in my neck is shrinking.
One big negative is the diuretics make me very woozy when I am standing. Initially I am light headed but then they just make me feel sick. I am not convinced they will do much as long as my shoulder is all plugged up so I’ll see if I adjust to them, today is only day 3, but I might just quit them. I’m already sufficiently immobile so I am opposed to anything that makes me even less able to move around.
I am going to email my onc to remind her to look for my brain MRI results. I think I will also bring up the idea of either cutting down or stopping my days off the Capecitabine for a few months. My last cycle with 16 days of pills, things began to get worse on my 3rd day off and began to improve again on day 5 on. The cycle before that was 14 days of pills with 7 days off. Things began going backward around day 3 off and did not start to improve until day 7 or 8. That indicates the new regimen is better but I would like to not go backwards at all. Perhaps with no days off for a couple cycles the cancer could get knocked down enough that I could go back to 5 days off and if things really stabilize I could eventually go back to 7 days off.
My side effects have been pretty manageable, a few mouth sores but nothing big, a little diarrhea, but nothing like being on Docetaxol, and a few signs of hand and foot syndrome. My fingertips are dry and sensitive and a couple fingers have cracks that are healing. I have found some good hand cream now and my fingers are getting better. I am happy to deal with these problems and worse if the cancer can get smacked down more.
Gah, I think that is enough for now. Oh, and for the record, after discussing my bad week with Ian, we have agreed that 2 weeks ago is the worst week I have ever had. I can only hope that it is now in the rear view mirror and things just keep getting better. Spring has got to become springy soon and I have a garden that needs my attention.