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

Cycle 4 begins tomorrow

I am not ready physically or psychologically to subject myself to another round but I really don't have much choice if this treatment is to work. I keep reminding myself it is only five days and if I made it through the first three times, I can do it again!

I am so glad I have had the weekend in Portland surrounded by family. I can't believe how much the grand kids have changed in just two weeks. The little ones are a month old already and Alex (who my sister is holding in the photo) is so long he is going to have outgrown the cradle in a few weeks and Finny looks like she has doubled in size. Kai is now communicating in several sentences and Dash amazes with with how much information he knows about the Muppets and Thomas the train stories. Both families got together last night to celebrate Sue's 77th birthday and the fact that she has sold her house in Modesto and is now officially an Oregonian.

I am counting on the healing energy coming for all of you to get me through cycle 4. I have my lovely bag full of your wonderful messages that I will read or have someone read to me each day.

I remember how to hit a golf ball!!

Such a beautiful spring day today. After a long walk with Sophie, I couldn't resist going to the country club to see if I remembered how to hit a golf ball. Only had enough energy to last 15 minutes on the driving range but did hit 5 wonderful drives over 150 yds!! What a boost to my morale. Have two more days of sunshine to try my hand at other parts of the game before the rains come again and I head up to Portland for cycle 4.

Feeling much better

Feeling much better today and a little sunshine doesn't hurt. The cold seems to be much better , but am trying not to push things. Hoping that we will finally have some May weather (temperature wise) this week so that I have a chance to enjoy it before going back to the hospital.

Under the weather...

Woke up this morning feeling a little off and by this afternoon, it looks like I am coming down with a little cold.: scratchy throat, runny nose, bit of a cough. Am staying home, drinking liquids until I feel like I am going to float away. Hopefully I will nip this in the bud. Had hoped to go to the coast for a few days of R&R but am thinking it will be wise to just stay home. Darn...

SUNSHINE!!

It sure helps to have a couple days of sunshine to lift your spirits and to help me with my recovery. I am able to get out and walk around the neighborhood, going a little farther each day. Sat out on my patio and read a book yesterday afternoon...what a treat!! Looks like the rain is coming back this weekend so I am going to try to take advantage of every moment of sunshine. Sending out rays of positive energy!

Home is really good!

Too tired last night after coming home to post. Was wonderful to sleep in my own bed and see Sophie. Right now I need lots of sleep and just need to pace myself. (Keep reminding me everyone!) One thing that we learned is that no cycle is like another and we just can't predict what reaction and side effects I am going to have from the IL-2. Just when you think you have things under control something new crops up. But we are learning strategies of things I can do before I am in the hospital and during that may help lesson the side effects.

I can't thank Phyllis, Carolyn, and Bobbie enough for taking such good care of me in the hospital and afterward. I am sure it is a major reason that I am doing so well. And, of course, all of your prayers and healing thoughts make a huge difference. I really can feel the energy!

Good Evening from Molly

First, thanks to my wonderful daughter for keeping everyone informed and for outshining me with her posts.

I am very comfortably ensconced in a two bedroom suite with a lovely view of downtown Portland. We have seen several rainbows as it rains and then shines.

I am doing well (sooo much better than the last two times) but due to my setback of yesterday, I won't be heading home until Tuesday. But I think that is good that I stay in one place for a couple of days to just rest and recover before taking the 2 hour drive there.

Happy Mothers' Day to Me

...or rather, to Mom.

Continuing her much-better-than-expected experience this cycle, Mom was actually released from the hospital today/Saturday mid-day (which is the normal time to go home for the treatment cycle but the first time she's actually been able to do it). What a great early Mothers' Day gift.

Friday night Mom was feeling well enough to eat real food, so Phyllis and Carolyn went to the market and came back with a wonderful deli spread. Evidently they "picnicked" in Mom's room until quite late at night, talking about any and all subjects other than Mom's treatment.

Because the digestive issues got way better overnight and her creatinine levels had fallen, Mom got the ok to head out of the hospital and move to home care. Of course Mom being Mom she promptly insisted on taking P & C out to lunch on the way home to thank them, totally over-pushed herself, and ended up crashed with a slight set-back by late afternoon. However after a long nap, some medicine, and a chat with her physician it sounds like she's back on the recovery track and is sufficiently chastened that she promises to behave during the next few days.

The good news doesn't just end there though. Not only was she able to get out of the hospital earlier, but she was also cleared to return to Corvallis on Monday. Up to this point she's ended up staying in Portland for most of the week after treatment both because she was required to come back in for blood tests to make sure she was doing okay and because even without that, she didn't have the strength or feel well enough to make the drive home. But now (barring any setbacks over the next day or so), she should be able to be taken home and get back to her own bed, own dog, and own friends much sooner than any of us could have predicted.

A huge thank you to Phyllis, Carolyn and Bobbie who really stepped up this week and made it possible for Jon and me (and for Lori and Brian) to take a step back in intensity of care and be comfortable that she was still in excellent hands. With our own sleep deprivation to deal with and 2 two-week old babies (plus 2 toddlers) to care for that was a huge gift to our families as well.

Same as it ever was...

..and yet totally different.

It's Friday again and in many ways it's like the other Fridays. Mom is done with IL-2 (they stopped her after her 9th dose again), the diarrhea and other digestive side effects continue to increase (and stand as one of the major issues keeping her from being released), and her kidney/liver function is compromised. That is all familiar.

However she is sitting up in bed, dressed in bright clothing, and speaking in a strong, clear coherent voice. Moreover when she does need to deal with bathroom issues, she's able to get up and walk into the bathroom and take care of things herself instead of needing to be helped onto a bedside commode. And her electrolytes are pretty much back in line. As simple as those differences sound, they are HUGE. None of us who were here for the earlier cycle can believe how much better she seems this time.

Now we wait to see how quickly and slowly the rest of the recovery comes along. Her digestive issues need to slow WAY down before they'll let her go (that's what kept her 'til Wednesday in Cycle 1 and Sunday in Cycle 2) and I think they are also a little concerned about her kidney function coming back on line as her creatinine levels have continued to rise even after she stopped getting doses.

So we're hopeful that she'll be released this weekend (though I think more likely Sunday than Saturday). We'll keep you posted.

One of the things Mom asked me to pass along is her belief that the healing energy you all have sent and the amazing love and support and images of healing blue light you provided her at the send off Saturday morning have been a key component of this Cycle going more smoothly. So thank you all.

Hanging in there...

It's amazing how different each of these three treatment cycles have been. They warned us about that but it still is strange to think that you've got things figured out and know what to expect and then find that actually, you don't.

For the most part, this has actually worked in Mom's favor this cycle. Though she does have a couple of new side effects we haven't seen before (bright red rash, very painful stomach cramps, nausea and a hugely swollen face from fluid retention) they are manageable, and the more familiar side effects (debilitating diarrhea, neurotoxicity/confusion/incoherency, chills/rigors etc) have as yet to hit her as hard.

Today is Thursday, traditionally one of Mom's worst days on the cycle, and she was actually up to having a sponge bath and sitting in the window seat to enjoy the view (such as it is) and occasional sunshine. That would never have happened on Cycle 1 or 2. This is not to say that she feels great...she's still feeling pretty darn sick and miserable ...but just to emphasize how different (and I think better) this cycle is going.

She was able to get her 9th dose this morning and then they skipped the 3 pm dose so she's currently 9/10. Given that 9 doses was all her body could handle in the first two cycles I don't know if they're still hoping to sneak another dose or two in or whether they're done.

Mom has one of her favorite nurse/CNA combos back today (Daniel and the incredibly hunky Max) and it definitely cheered her up to see the familiar and trusted faces. Alex and I stopped by mid-day (as did Jon) to give Phyllis and Carolyn a break and Mom was able to get some baby-holding therapy in...always a good thing

One of the things that has really really helped her this week was reading and re-reading all the 'healing slips' from the wishes and images and items that so many of you sent with her during the past couple of healing circles she held pre-cycle. It's hard to overstate how much these help, and each time she reaches for one she gets to see and enjoy that beautiful, meaningful quilted bag that they are held in. So a huge thank you to all of you for the support you've given her.

Managing the balancing act...

A rare sunny day in Portland and Mom took advantage of it to sit in big chair by the window and soak in some of the warmth and rays.

That was a rare highlight for her though in a day when the big IL-2 side effects were all starting to make their presence felt. Her blood pressure and electrolyte levels were all over the place (mostly way too low) and took a lot of managing by the nursing staff. And this evening Mom reported that the less pleasant digestive side effects had all started to kick in in all their misery.

Despite this she was 7/7 on doses as of this evening and expected to be able to get her 8th dose tonight at 11. If she does she'll only be one short of where she made it the past two cycles. So mostly likely she is very close to being done with receiving doses (unless her body is able to absorb a lot more punishment this time) and will spend the remainder of the time in the hospital trying to re-stabilize her systems so that she is well enough to be released.

Alex and I will probably go spend some time at the hospital tomorrow so I'll be able to give a first-hand report on how she's doing on what (in the past) has been one of her rougher days of the cycle.

2 Days Down, 3 to Go

End of Day 2 and Mom is hanging in there. As of now she's 4/4 on doses and I don't think there's any reason to think she wouldn't be getting her 5th dose at 11 tonight. That will make her (likely) more than halfway through her treatment as both of the previous cycles she ended up with 9 of the 14 possible doses. But we'll see...

It wasn't too bad of a day today. Mostly so far the side effects have just been bone-crushing tiredness/lack of energy with an accompanying drop in blood pressure/disruption of electrolytes. But so far (and we're all enjoying it while we can) no diarrhea or vomiting.

Though she was tied to a an IV pole for the majority of the day, she did manage to take a nice walk around the floor in the morning, and was able to enjoy visits from Jon, the Davis family four (with double grandchild bonding), and her sister Sue. Meanwhile, Phyllis has been great company and taken really good care of her.

She's very frustrated being (mostly) locked in a bed (which has been a consistent issue for her to deal with over the 3 treatments) but she's taking to heart the comment from one of her friends that there must be a 'jet stream' of healing energy being sent her way and she's planning on riding it as far as she can.

And so it begins again...

So Becca here at the end of Day 1.

By cycle 3 you start to get into a real routine. Brian got Mom to the hospital bright and early this morning and she set about setting up her mattress pad and healing altar and fleece throw and the other little touches that make the hospital room seem a little more homey and bearable.

It was a long morning though: there were a number of delays getting the central line put in (including the seemingly inevitable laying on gurney in a hallway for 20-30 minutes waiting for transportation to arrive) so Mom wasn't back up in the room and able to order lunch and get settled until 1 pm.

The Davis family four were there at that point and Mom got to have a little bit of baby bonding time and then some great chatting and interacting with Kai during which time Kai took full advantage of Mom's last real meal for a week to pilfer as many french fries as she could get away with.

Phyllis, who will be with Mom this week (thank you thank you thank you), arrived in the early afternoon in time for dose #1. One of the things you learn about IL-2 treatment is that the body starts recognizing it and reacting more quickly as you go through more cycles. It says...ah yes, I remember you...WHAM!

Evidently that's what's happening/going to happen this time (though it didn't so much on cycle #2 when we had been expecting it) as it only took that first dose this afternoon for Mom to be hit hard and have the wind taken out of her sails. Though not nauseous yet, she is already exhausted and feeling flu-y. The positive way to take that is that is certainly seems to indicate that her immune system is on the case and primed and ready to go.

Mom had a good visit in the early evening with the Bloomfield-Townzen family four including some nice Dashiell bonding.

Keep/Start sending healing and energy-filled thoughts up this way. Looks like Mom is definitely going to need them this cycle.

I'll do my best to keep things updated.

Ready to tackle cycle 3!

What a marvelous weekend to get me psychologically and emotionally ready to begin my next cycle of treatment on Monday morning. Saturday morning 23 friends gathered to share wonderful food and gifts of special traits with me. The room was filled with love and healing energy that will carry me through the next two cycles of treatment. Any time I feel down or need encouragement, I can reach into my beautiful bag and pull out a message of support from the healing circle breakfasts that I have had.

This morning my children and grandchildren got together for an early Mothers day brunch. They gave me flowers and loads of hugs. The day was beautiful so we made the most of it by being outside and taking walks around the neighborhood. Just the thing I needed before being locked in a hospital bed for the week.

Even though I know what to expect, it takes a great deal of courage to enter another cycle of this treatment. Please keep me in your thoughts and prayers and I will imagine being held by your supportive hands and surrounded by healing blue energy.