51. Paclitaxel VII and VIII

It's been a couple of weeks since I wrote. I had a nice relaxing time with my friend who was visiting (who left this morning) and made it up to the Blue Mountains, Katoomba, last Friday. It was a perfectly beautiful day to be in the mountains and I walked 11.37kms and 15,152 steps. The most active day I have had since my surgery last year. On Saturday I had to go down steps backwards, as my knees were not happy with me, but I didn't have any lasting effects other than wonderful memories and more muscle tone. Other things we did was some walks around The Shire, experienced a beautiful sunset over Botany Bay (with planes coming in to land overhead), enjoyed watching some movies at night together, some great conversations and enjoying each others company.

On the medical side of things my ultrasound showed I have no blood clot in my left leg. Good news, though with my track record I wouldn't have been surprised if there had been one. My appointment was at 9.30am and I was in the room by 9.37am which was nice and prompt for the medical imaging department from previous experiences I have had there. The sonographer was a lady, unfortunately I have forgotten her name but let's call her Anne. I had to take off my shorts this time, a change from stripping off my top half like all the times before. I lay on my back and she started right up the top of my leg, following the vein down from there, all the way down to my ankle. I have long legs so LOTS of gel used. I wonder if it has moisturising properties...? After she did the front side she did the back and then last she did the section where it was sore, hot and lumpy. That is behind my knee on the inside. Sometimes she really pressed hard in parts that hurt more than I thought it would, on areas that weren't already sore. Anne said she did that to make sure the veins squished properly, to make sure they looked the way they were meant to. The whole appointment took about half an hour and she said she couldn't see anything more than a new varicose vein. I get the gel all wiped off and then I head to my chemo appointment with about 13 mins wait.

Backing up a bit, the previous day (Monday 1st May) I had my blood test at the hospital. I had a few things on so got there about 8.50am. I had to wait about 35 mins which was pretty much on par with what I thought. I had an appointment with Paula at 10am so hadn't wanted to be late. After her appointment it was lunch at Jbeil's Lebanese restaurant at Kareela with Ange, Shell, Jon, Evie, Zaeli and my visiting friend. Such yummy food there. We had the place to ourselves as well which was very nice. After lunch I went and had a massage. Carlie didn't massage my legs though as I hadn't had the ultrasound yet and if there was a blood clot she didn't want to dislodge it. It was a busy Monday but a good one all up. There was also an AMAZING double rainbow that lasted for a LONG time to end the daylight hours as well.

So, back to my chemo XI (or Taxel VII). 1007am. Donna was my nurse. my Neutrophil count was 1.58 (dropping). She told me to make up a "numbness" number for my toes and fingers. Like the pain scale but for numbness. I worked out my little toes were a 4 and tops of my big toes were a 2. My fingers weren't really numb but if anything maybe a 1/2 or a 1 at worst throughout the week. Persephone was being a wench again, she was stabbed twice, lying backwards in the chair worked better for access. She is moving away from where she has been. Deciding on a bit of a trip? Hmm, Persephone? Getting bored by being in the one spot? Donna eventually got her to bleed after some deep breathing, leaning forward, a few coughs, lifting my left butt cheek. Who knows, that might have been what made her decide to give it up in the end. When she did eventually bleed things were straight forward and I was done by noon. Well, the fire alarm went off twice but we didn't have to move thank goodness. Trying to get a room full of people attached to IV poles, needles stuck in their chests or arms, some who needed walkers or wheelchairs to move, would've been quite an accomplishment. When I left there were 2 fire trucks outside the hospital but no one waiting outside, no smoke I could see or smell. Maybe a fault? 34 hexagons done.

Monday 8th - blood test again. I only had to wait 2 mins this time. Quickest time either. The same gang who went to lunch at Jbeil's came over for lunch so that was fun having everyone here. I did do an exercise class with Lewis (I didn't on Saturday - was still recovering) and felt quite good again. The body is amazing isn't it. What I've put it through and had put through it and it still keeps repairing and recovering. The exercise definitely has a big part to do with that as well. I did a class yesterday, I didn't hold too much due to the fingers being a bit clumsy but Lewis has these weights that can be put on wrists or ankles with velcro so I could still have some resistance.

Chemo XII (Taxel VIII). Started off the morning with a bit of a nosebleed. Not bad like the one I had before, this one stopped within about 30 seconds. It is normal to have blood in the nose when you blow it whilst on chemo but not usually nosebleeds. Each morning I feel like I need to blow my nose and it is bloody. I blow it tentatively though! At least this nosebleed didn't leave me feel like I'd unintentionally donated half a litre of blood like last time. 1047am. Donna was the nurse again. Neutrophil count 1.57. Good, only dropped 0.01. I was wondering as it was dropping about 0.50 each weeks before. Remember, under 1 and I can't have chemo. Donna 'copped a feel' of Persephone. Donna says "I think she is slowly flipping over, I hope she doesn't do that and she has 4 more weeks in her to stay enough upright to access. Once there was a lady where one nurse had to man handle the port flat so another nurse could access it with the needle". Persephone is such a drama queen, always wanting all the attention. Donna got blood straight away (after 4 or 5 stabs) but then Persephone obviously wanted us to work for it as it then stopped. I leant forward a bit, breathed in deeply, lifted my left butt cheek slightly and turned my head to the right about 10 degrees. Ta DAAAA! "Jassie, look, amazing blood return" crows Donna. Jasmine looks and sings "wahoooo!". Two nurses have to sight blood return. I was done by 1.37pm. I don't know how many hexagons I did, I haven't counted them yet. Looks similar to last week though.

I did sew some more of them together yesterday. My fingers were a bit more clumsy though which wasn't so fun. I dropped the needle a few times. I also can't really see clear enough of where I should put the needle, so I feel for the needle to be just above the cardboard template to know it's in the right spot to sew. I'm using a neutral grey colour thread which recedes into all the different colours. I probably put my fingers at the numbness scale of 1or 2 depending on how they feel so far this week. Right now they are a 1. Just at the tips. My finger prints are still gone. I looked up some studies about that and it's more on the rare side for a paclitaxel side effect and more common with another chemo drug. As to whether they will come back, possibly 2-3 months after chemo though sometimes they don't fully come back or at all. I guess if I travel to the USA in the future and they aren't back I will have to have a letter from my oncologist about it. Otherwise there will be an issue at the border I am sure. I already had an issue once as I have a scar on my left thumb and the border officer thought there was someone wrong with the scanner. I tried to tell him that I had a scar but he told me off for speaking out of turn. So, probably just to be on the safe side next time I travel overseas I should have a letter anyway. I tried uploading my "new" finger prints for my iPad so I don't have to use the code to unlock it but even though it said new finger print added it didn't work. It was worth a try.

All my toes and the balls of my feet were numb on Tuesday night and Wednesday morning this week. Right now my little toes are a 2, my big toes are a 2 and the balls of my feet are a 1. Dr Michael says that they will get a bit worse before they get better with the dropped dose. I'll see how they are next Tuesday. I fully expect my dose to be dropped at least another 10% before I'm done. I'll see Dr Michael next on May 19th, unless something happens for me to see him earlier.

I will have to note that I really loved the cold weather we got on the weekend. I got out my ugg boots, jeans and even wore a jumper a few times. At night I had to wear a beanie on my head sleeping a couple of nights. Having no hair definitely makes a difference. I also sleep with a fan on all year round. I like the noise but I also like the air moving on my face. I woke up at 3.30am to pee a few nights ago and it was icy. I checked the weather app and it said 6.4c, feel like -1. The toilet seat was ICY too. That'll wake you up that's for sure!!! Winter is coming. YAY.

I still have a very light and thin line of eye brows and a few eye lashes left. Not having very many eye lashes is a bit frustrating, especially with having to wear contact lenses. My eyelids get a bit sticky and in the morning can be a bit gummed up. I don't sleep wearing my contacts but have to give my eyes a good wash and rinse before putting them in. The hair on my head is sort of growing a bit, very light fuzz. You can feel it more than see it. It is all totally silver white. That is very cool. I could totally rock the silver hair. I wonder if it will be really curly. That is most often what happens from what I have heard. I'm guessing that I really won't get any good hair back until about 3-6 months after chemo.

So, 4 more chemos to go. 4 more weeks. That means June 6th is the last one if there are no delays. It's like a marathon, or more like an ultra marathon. The physical side of things can be hard but it's more the mental and emotional side of things that take the most energy. The easy thing to do is just to spend it napping or watching movies in bed all day. It takes a lot of brain power to do little things that previously could be done without much thought at all. Today I am having a "lazy" day (really, it's a recuperation day), been in bed more than out of it but I have switched up my activities and haven't just been sleeping or watching a movies or YouTube. I have nothing specific planned (medical wise) until my next blood test next Monday. Choir practice tonight, exercise class Saturday morning, and then Mother's Day gathering on Saturday afternoon are the extent of my plans.