Alex knew there was something to smile about!

The docs decided that even though I could not use my arms without pain (one nurse said I looked like I had Tyrannosaurus Rex arm movement) that there was no reason to stay in the hospital. But I had to wait to leave until they pumped me full of calcium and phosphorus. By the time we collected everything and made a stop to see the kids, it was 5 pm. I decided that I just wanted to get back to Corvallis and be n my own home surrounded by my own things. Home in bed now, exhausted but happy to be here with Ione and her husband, Larry staying with me.

This was certainly an extremely difficult cycle which required a lot of courage to get through. I appreciated all your messages of hope and encouragement as I needed them all.

Things are looking up

A mischievous smile from Mom's visitor

After a night and early morning that still featured episodes of anxiety/anxiousness, joint pain and confusion, Mom was doing much better by mid-morning. She was lucid and awake and able to have an informative and productive conversation with the doctor making rounds and she got in some good grandson holding time.

Even better in the afternoon she was able to get a shower, change into fresh clothes and actually walk a lap around the oncology ward. Heaven. Those were all great positive steps forward and will all help her start feeling more like herself.

The doctor felt pretty optimistic that if Mom continued to improve at the rate she had from Saturday to Sunday that she should be able to be let out on Monday.

We'll let you know....

Climbing the walls...

Apologies from the ghost writer. That's twice this week I've missed posting. To make up for it I'm actually writing this from Mom's bedside so I can give an up to the minute account.

So... despite my previous prediction Mom received her 11 pm Thursday dose which led to a really, really rough night for her. Thankfully Carolyn was there to sit by her bed and remind her of where she was and what was going on. Mom was really fuzzy and out of it during the morning , drifting off again in the middle of sentences or actions. By mid-afternoon she was doing a lot better and was regaling us with stories. Then as the evening progressed things worsened again and a new symptom popped up: excruciatingly achy joints in her shoulders and knees. In addition, a lot of the neuro symptoms from the first cycle started to come back (though thankfully not to the same degree). In addition to fuzziness, she had anxiety, itchiness, antsiness, confusion. So not fun.

Based on all that the doctors gave her a choice of whether to have one last dose for the cycle and she (wisely i think) declined. So she ended up with 7 doses out of the 14 (after getting 9 the first three cycles) which was really good.

Today (Saturday) has been another tough one. She's certainly not going home today. The good news is that the electrolyte levels and diarrhea are all getting better. However her neuro symptoms (due to a combination of sleep deprivation, IL-2 toxicity, and impact of the other medications that were treating the IL-2 side effects) and achiness remain in full force. She is having great difficulty completing sentences (mostly because she drifts off in the middle of them) and they're not always making sense.

It's frustrating and distressing for someone who is always so on top of things and whose mind is so sharp to be in this position but at least this time she recognizes what's going on (most of the time) and knows it will pass.

So send good thoughts to her today, she needs it. Hopefully by tomorrow more of this will have worked it's way out of her body and she'll either be ready to be released or will at least be feeling better and resting up waiting to get out on Monday.

I'll keep you posted.

I think I can....I think I can...

Today was a real Little Engine that Could day with Mom having to remind herself that she was more than half-way through the cycle and she could make it through.

The day started out ok. She ended up not getting her 11 pm dose on Wednesday and by 6 am Thursday had been weaned off the Neo and was maintaining a strong blood pressure. She did receive her 7 am dose and when I spoke with her around 8 am she sounded pretty good. Shortly thereafter however the wheels started to come off. She had another attack of the chills that again couldn't be controlled with the hot blanket mummification and needed Demerol to break the rigors. Then Demerol then made her terribly nauseous and itchy and it, combined with sleep deprivation (especially after a night of having blood pressure checked every 15 minutes), knocked her loopy. When I came by a little after 10 she was fuzzy and not totally lucid and couldn't get more than a partial sentence or movement completed without drifting off in the middle of it.

It's never fun to see someone in that shape, but it would have been more disconcerting if a) we weren't already familiar with those sort of symptoms (but much worse) from Cycle 1 and b) it weren't totally understandable that somebody who was sleep deprived and sick and then given a narcotic would be kind of out of it. So while I spoke with the nurses about keeping an eye on these symptoms to make sure she wasn't heading towards neurotoxicity issues, I felt pretty comfortable that sleep and getting the Demerol out of her system would help.

Her electrolytes were also continuing to bounce all around so it was extremely unlikely when I left that she was going to get her 3 pm dose. When I checked back in with her around 2 things were both better and worse. Better: the Demerol had worn off and she was much more lucid and together and had more strength and life in her voice. Worse: her blood pressure had tanked again (86/46) so she was back on Neo and the 3 pm dose was definitely scratched.

As of 9 pm or so she was waiting to find out if she was going to get the 11 pm dose. Our guess earlier was that she probably wouldn't, but that they'd try and see if they could get her the 7 am dose again before calling it good for the cycle. We'll see if that's what happened.

I think all of us are grateful to have gotten through the day and only have one more to go before the healing and recovering can begin again (THANK YOU to Carolyn (and to Amy earlier in the week and Phyllis last week) for being such a wonderful friend and staying with Mom in the hospital so that Jon and I can also be there for our families and new babies.

Doses: 6 for 10 of 14

Drip...Drip...Drip...Drip...

No, this title isn't a commentary on this spring's dreary weather in Oregon (though it certainly could be) but rather about the pharmacy that Mom currently has dripping into her veins today. Let's put it this way: she has 3 different lines to connect to going into her central line/port (and yes, I know I have my terminology slightly off) and two of them are doubled up and she has other bags waiting to be connected. Right now the IV pole contains (among other bags) Potassium, Magnesium, Sodium Bicarbonate, Neo, Saline solution, and a glucose solution.

The big hitter on the pole is Neo (Neo-synephrine) - the tool that the staff use to manage blood pressure when an IL-2 patient's body can't maintain it any more. Because it's such a heavy hitter drug, it must be titrated very precisely, so patients are monitored 24/7 and their blood pressure is taken every 15 minutes. (During the couple of hours that I was there I watched her nurse come in and dial it up and (mostly) down) multiple times). Mom is certainly not looking forward to trying to get sleep over the next few days with a pressure cuff squeezing her every 15 minutes.

The reason she had to be on Neo is that at this point her blood pressure wasn't stabilizing and they had already tried keeping it up by IV boluses. And since they're hoping to squeeze in a couple more doses before she goes home (maybe 1 a day?) they're expecting that she's going to need to be on the drug for the duration.

She wasn't able to get her 3 pm dose due to her low pressure, but they're expecting her to get her 11 pm dose unless her blood work shows some really funky numbers. Not to say that her electrolytes are playing nice; they're all over the place (hence all the electrolyte drips). But at the moment they're enough under control to continue the treatment.

So the story for the next few days is going to be handling her with kid gloves and trying through all sorts of medical (IV drips, anti-nausea and anti-diarrhea drugs) and non-medical (warm blankets, salty food) means to get her a little bit more of the medicine each day. We'll see...

Doses: 5 for 7 of 14

Topsy Turvy (aka better late than never)

Hey all. Sorry for the late posting.

So Tuesday continued the trend of a) having no idea what each cycle will bring and b) having to view events through 'bizarro-world/topsy-turvy' glasses.

So last cycle we kept talking about how well Mom went through it and how surprised we were that she didn't have a lot of the same symptoms as before. Well, this time she has all new symptoms again but they are really the pits. She felt AWFUL yesterday, the worst so far and in many cases it was because body systems were actually reacting the opposite way as they have the previous 3 cycles.

But that's where the topsy turvy part comes in. I had to remind her that she was almost worried last time because she didn't feel so bad which makes you wonder/worry whether the IL-2 was being as effective at triggering her immune system. So this time, when she does feel awful and her blood pressure craters it's paradoxically a really good thing: a pretty clear sign that the IL-2 is working. (Or at least that was the line I was trying to sell her).

She ended up skipping her 11 pm dose last night because her blood pressure was too low but she had her 7 am one this morning again. In addition to the blood pressure issues, she's had really severe chills that turn into rigors and have needed demerol in addition to hot blankets to stop and wicked nausea. Still, she's been able to eat small amounts throughout and get some good naps in.

Hopefully today she's able to maintain at this level and not feel too much worse.

Doses: 5 for 6 of 14.

Insult to Injury

The newest incarnation of the healing alter featuring the power of grandchildren cuteness!

So...Day 1 of Cycle 4 is almost in the books. In many ways it's been super smooth: since this isn't Mom's first time at the rodeo she's got the check-in and set-up routine down cold. (she even thought to request an even-numbered room so that the furniture/bathroom configuration would be familiar and not mirror-imaged)

However (in addition to the allergies that are suddenly plaguing her) there seemed to be some difficulty in getting the central line in this morning and the doc had to poke and push through 3 different times to get it in. We're not sure exactly what got pinched or bruised or traumatized in doing so but Mom was left in a good deal of pain from the procedure. In fact, she said that it was worse pain than anything she's had to deal with during the IL-2 cycles. She tried dealing with it with tylenol and advil but by late afternoon we had to move to Dilaudid to try and manage the pain. That made a huge difference and got the pain back under control but brought with it its own set of side effects: itching, nausea, light-headedness, etc. Not exactly how one would hope to head into the week.

However by 8 o'clock Mom was doing a little better and had managed some fruit and yogurt and crackers for dinner. Hopefully she's able to get a good night's sleep after her 11 pm dose and can wake up knowing she only has 4 more days to go.

IL-2 Dose Status: 1 for 1 of 14