Turned a corner

Woke up this morning and felt better than I have in 6 weeks. Seems like I have turned a corner in my recovery from the first rounds of IL-2. Even felt both hungry enough and motivated enough to cook some healthy breakfast muffins for myself. Went with Lynda to a nursery and found a bowl and fountain to put in my back yard. Looking forward to setting it up and listening to its sweet sound on my porch and in my bedroom.

Good report from the dermatologist

Up in Portland with the kids. Went to the dermatologist for a check today and for the first time in I can't remember how long, there was nothing to biopsy or burn off. Got a clean report! Stef's brother Ken and his wife Ellyn arrived tonight from San Jose. They are visiting the kids tonight and tomorrow morning and then taking me back to Corvallis for a weekend visit.

Walked 1 mile!

It is warmer today so Sophie, a friend, and I went for a walk and I made it one mile. What an accomplishment only one week out of the hospital. "Good Job, Molly" as my granddaughter would say!

Sunshine!!!

Spring has sprung and the daffodils and flowering trees and shrubs are popping out all over. They have been hard to see through the pouring rain we have had all week. But this morning the sun came out and Sophie and I even had a very slow walk around the block. The wind was still very cold but it was great to be outside and in the sun. Sure helps the spirits!

Don't worry if my blog posting starts to get more sporadic. As long as I am improving steadily, there isn't a great deal to say. I will certainly keep you posted on the milestones. Interesting comment to a post about my IL-2 treatments that I made in a chat room for people Stage IV melanoma. This 55-year-old woman said that she barely survived the second cycle of IL-2. She couldn't imagine someone at 66 doing it! She ended "You go girl!"

A little stronger each day

Doing a little better today. I went to see Piper Jones this morning and had a lymph drainage massage. My edema is now almost all gone. She is fantastic. I high recommend her even if you don't have trouble with edema. Opening up lymph passages and drainage really helps your overall health and immune system.

I look forward to interacting with you all. Short phone calls or visits are welcome, but call first before you visit and please do not call between 1 pm and 3 pm which is my designated nap or quiet time.

HOME!!!!

Got home this afternoon and it is so wonderful be be back in my own environment. Sophie was overjoyed to see me and is keeping me in her sight at all times. Still having stomach issues and don't really feel like eating anything. Everyone says I look wonderful. It must be the very expensive face peel I just got!!!!

Not home yet

Had a really rocky morning with several of the less pleasant side effects returning. So I decided I wasn't up to driving back to Corvallis. Things got better as the day progressed and I am planning on returning to Corvallis tomorrow afternoon.

Oh for a good night's sleep!

I totally overdid things yesterday and was completely exhausted by 8 pm. I thought that I would be able to sleep. Nope, up every two hours. Lots more side effect this time that are taking longer to resolve which is to be expected...but I get impatient. Hope to go home to Corvallis today with my friend Jean who is flying up from Palo Alto to stay with me.

Thankful

It's 3 am and I can't sleep. Guess 5 hours of napping during the day is too much. But I wanted you all to know how thankful I am:

• For a body that is resilient enough to take such abuse and has the strength to recover from the side effects of the drug so quickly
• For the nurses and CNAs on 7N of the Providence Cancer Center who do so much more than physically care for their patients. I think that they are much of the reason that the Center has such a high success rate with IL-2
• For my family who are there for me every moment and who truly seem to love me not only as a parent or sister but as a friend
• For my amazing support system of friends who send me off to the hospital with a bag full of nurturing thoughts and the support of many hands sending healing blue light and who volunteer to stay in the hospital room with me in spite of being awakened every two hours so that i won't have to face the pain and fear alone
• For medical researchers whose work has allowed me to live at a time when there is finally some hope for remission for patients who are diagnosed with stage IV melanoma

There is no adequate way to say Thank you enough but I hope that each of you knows how much your emails, cards. notes, smiles, laughter, and hugs means to me.

First day out of the hospital

Hi all....I am feeling good enough to post again. Thanks to Becca for doing a great job of keeping you all informed. Had a good but tiring day. I have to keep reminding myself that I was still in the hospital at this time the first session so not to expect so much. I am getting stronger by the hour and my skin inside and out of my body seems to be healing up. The thing that is worse this time is the edema especially in my bad leg. I am hoping that the Lasix does its thing and I am less bloated tomorrow. Going up and down the stairs here is helping my endurance and I hope to venture out for a walk around the block tomorrow.

Jailbreak Part II

I wish we had a picture of me speedily wheeling mom out of the hospital under cover of lunch break. Okay..it wasn't really that stealthy but everyone was busy/gone and we had permission for her to go so we just up and left. :-)

So mom is now officially done with Cycle 2 and settled in at our house. While on the whole this cycle went MUCH better than last one (evidenced by her being released on Sunday instead of Tuesday!), she is suffering from a couple of side effects this time that she didn't have last time. The worst of these is the losing of/peeling of a whole layer or two of skin over her whole body and in her mouth and throat. Very common on IL-2, but very painful and annoying as well.

Other than that she needs to get her digestive track fully back working, needs to try and recover/make up from the sleep deprivation, and needs to get her liver and kidneys fully back online so that they can finish clearing the rest of the toxins and other crap in her bloodstreams out and she can be fully mentally back to herself again.

As she feels better she'll be more in touch with folks. Right now she still feels pretty lousy but she's happy to be out of the hospital and is feeling optimistic about the drug's effects.

becca

Down the rabbit hole... (and on to the home stretch)

10 am Saturday

Mom has had an eventful last 12 hours!

First the good news:

• She is doing 100% better than last cycle at this time
• She's doing relatively well in general
• She and I and her physician all agreed that we would be most comfortable if she spends one more night here and then comes to our house tomorrow. And unless something new pops up (or digestively things keep getting worse/don't get better) there's no reason why she shouldn't be able to do that.

Then the less great news:

• Her digestive woes were back with a vengeance yesterday afternoon/evening/night. They put her on a total intake freeze (no water, no ice chips, no nothing) for 12 hours to give her system a chance to rest/recover which seems to have helped. Now she's slowly starting to eat things again though she's restricted to a pretty bland diet. We'll see if that goes well or if everything blows up again

Then the 'exciting' news (not bad...just 'different')

• Mom took an Ambien to try and sleep last night as she hadn't slept at all the last 2-3 days. Well....that ended up being interesting. One of the normal side effects of IL-2 is kidney and liver function shutting down (at least partially). Because of this her body isn't able to metabolize or get rid of drugs the way it normally would. Plus in general her electrolytes etc aren't normal so I'm sure it's reacting differently anyway.
  
  Anyway...after a comedy of errors/miserable episode in the middle of the night that resulted in a CNA being fired (or resulted from a CNA being fired mid-shift....i'm unclear on that) she took the drug and fell asleep to vivid bizarre dreams. In part of them (around 4 am) she was leading a group of school kids down the hall with all of them in their hospital gowns and pushing IV poles and then approached a shadowy nurse figure to say hi. She started telling the nurse "I don't belong here. I should be home." at which point the nurse looked up and said "Oh my gosh Molly! No, you belong here. You're not going home til tomorrow. Let me help you back to bed!
  
  So yep. Mom had a jail break last night. Either her bed hadn't been re-alarmed after all the craziness (most likely) or somehow they didn't hear the bed alarm (less likely) but she was in fact wandering the halls in the middle of the night. Luckily/thankfully she didn't fall and nothing happened and she was fine. But a) I think it probably led to some re-training of folks here and b) was definitely part of the decision to keep her overnight one more night. The last thing we need with her sleeping at the top of our steep stairs is sleepwalking.
  
  

So in general today she's swinging between being completely lucid and then being fuzzy/out of it/narcoleptic from a combo of the sleep deprivation and there being left-over drugs not yet cleared out of her system.

We'll keep all posted if anything changes but in general we plan for her to be back at our house by the afternoon.

Becca

Slight crash and burn and now recovery

Hi all-

Mom ended up being able to receive her 11 pm dose last night (9 doses! that's incredible for cycle 2!) but that at least partially put her over the edge. While she has yet to display any of the neurotoxicity symptoms this round (which is great as those were some of the hardest side effects for her to deal with), her blood pressure crashed last night around 2 am to something like 60 something over 30 something. The boluses of saline did nothing to fix it so the big gun BP drug was brought out.

While this is obviously a serious complication and a little hairy at the time, it's pretty much expected/par for the course for IL-2 and the nurses are all prepped and able to handle it. By 6:30 this morning her BP was back up to 97/40 something and by 10 am they were working on weaning her back off the BP medicine.

Given her drastic reaction to that last dose and the fact that she's already had as many doses as she had last cycle she's likely done for now. (She didn't have the 7 am dose and won't get the 3 pm dose.) I suppose if all her blood work miraculously improved over the course of the day they might try one last 11 pm dose, but her Dr is satisfied with what she's received and doesn't want to push her body too far. He also told her that the blood pressure crash, though scary and not pleasant for her to go through, was actually a good indication that her body's immune system was responding to the IL-2 as you would want it to. While nothing is certain until we see the scans in a month, there have been lots of little signs that things hopefully are reacting/working.

So..for now she's spending the day trying to recover. Her BP needs to stabilize enough that she can sit/stand/move without dizziness or risk of fall, her electrolytes and other blood work numbers need to start trending back in the right direction, and her diarrhea needs to resolve enough that we can manage it with home care. On top of all that she's fairly zombie-like from sleep deprivation and is having trouble not slurring because her mouth is so dry (and she's tired and her creatinine levels are too high). But she's all there...totally unlike this time last cycle.

If things resolve as folks would like she'll come back to our place tomorrow to rest/recover. If not, she should like be released on Sunday.

We'll keep you posted.

Starting to slow down..

Thursday mid-day update.

Mom continues to surprise us kids in how well this cycle is going even though she herself doesn't feel that good.

Let's see....since the last update they decided to hold off on her 11 pm dose but then felt good about giving her the 7 am dose. So incredibly she's 8/9 on cycle 2. I don't think any of us would have predicted that given how things went last time.

That 8th dose may end up being her last one..we'll see. Her blood pressure has been staying in the 80s/40s for a lot of the day which is (obviously) too low. As of 12:30 or so they had still been able to bring it back up to at least 85 just using boluses of saline,but they've got the big gun ordered for her and ready to use if needed. (That's the blood pressure drug that needs to be so tightly titrated that they check blood pressure every 15 minutes with it. She was on it for about 24 hours last cycle).

Her nurse was feeling a little better about her when we left but at this point she's (not surprisingly) getting very dizzy, woozy, and pale/gray if she sits up or tries to use the commode, etc. and she just feels out of it and gross. I'd be surprised if she gets the 3 pm dose, unless her blood pressure has really rebounded in the past few hours.

The increased medication she's been getting is also making her start to slur her words again and her sleep deprivation is making it hard to keep a thought going, but at the same time she's not suffering from the neurotoxicity yet so she's still all there underneath. We keep telling her that as observers of both cycles we still think she's in pretty good shape all things considered, even if she doesn't feel like it.

We'll see where they go from here. If that's all the IL-2 she receives this cycle I'd call it a real success and be pleased that she has a couple of days to try and recover before her week is up. And if they're able to give her more, yay for that as well.

Becca

Important Scheduling Note re: April

A quick note to all of you that Mom had spoken with regarding Cycles 3 and 4 that we're hoping she'll be eligible to go through. We had thought that these were due to take place April 11-15 and then two weeks after that. However we just learned today from her physicians that the gap between cycles 2 and 3 is actually very flexible.

4-5 weeks after Cycle 2 they'll give her a new set of scans. If she shows improvement, they'll ok her for the next set of treatments. We knew that part, but we had understood that then those treatments were regimented to pretty much start pack up immediately.

However it turns out that her physician actually prefers often to wait another week or two to ensure that his patients have a little more time to recover their strength and feel more like themselves and be healthier before undergoing IL-2's rigors again. And he makes this scheduling call on a case by case basis.

That means that a) we won't know whether mom is a go or no-go for more therapy until the second week of April or so (which isn't new info), but then b) if she is a go...we won't know until then when her treatment weeks will actually be (this is new info).

So if you were somebody who had volunteered to help her in Portland or in Corvallis during or after her treatment weeks she still very much appreciates and will need that help (since Lori and I should both have newborns by right around then and Jon and Brian will be helping us and caring for Dash/Kai) but she won't be able to confirm when she actually needs you until a month or so from now.

We're really sorry for any inconvenience or change in plans this may cause and understand that some of you may no longer be available, but it turns out that's how this treatment scheduling works....

B

We'll keep you posted.

Wed PM: Still looking good....

Update based on 5 pm conversation....

Things so far are going surprisingly well. Mom has had 7/7 doses so far (which is certainly better than I was expecting) and (again so far) is feeling much better than she did at this time during Cycle 1.

While she's definitely seeing the blood pressure drops from time to time they've been able to bring it back up each time without using the big guns and they also seem to have gotten back on top of the nausea and chills - that hasn't been an issue for the last two doses.

At two different times today Mom was able to move over to the arm chair by the window in her room and sit there for awhile. Again, that's more than she was feeling up to last time. And she's still occasionally eating things too which is also great for her body. Both yesterday and today she had a hard boiled egg for breakfast....much better than barely getting broth down.

There are still some uncomfortable/miserable side effects and her electrolytes and other blood work is definitely showing the effect of taking IL-2 and causing her to need lots of different IVs to manage, but in the grand scheme of things (and especially considering what we were expecting for this cycle) she's doing great. All this could change after her next dose (or the one after that) if that's the one that pushes her over the edge, but for now we're appreciating it.

Of course feeling better also means she's more aware of how claustrophobic it makes her to be restricted to an alarmed bed in a small room for 5 days....

Hopefully she's able to take her 11 pm dose and succeeds in getting a little more sleep tonight.

I'll check in with her in the morning. Amy is there taking good care of her now.

Becca

Quick Wed AM update

Mom had a good news/bad news night (though from my perspective more good than bad).

The bad:

• She hardly slept at all (due to the drug? due to napping most of the day? who knows)
• She's very very itchy/rashy from the drug or from an allergic reaction to something else she's in contact with

The good:

• As of 7 am this morning she's set to be 6 for 6 on doses
• No chills or nausea after the 11 pm dose and the gastrointestinal distress is still (so far) holding off.

I'd say that's a win in my book.

Hopefully she's able to tolerate her doses today without too many drastic reactions.

More at the end of the day once I know how things have gone.

Becca

Tuesday: A day of ups and downs

Sorry for the late post. Here's the Day 2 update on Mom.

The ups:

• She's 4/4 on doses and is thus likely at least half-way through receiving the drug. (Even though there are 14 potential doses, I base this statement on the fact that she was able to tolerate 9 doses last time (actually...she tolerated 8..it was the 9th that totally pushed her over the edge) and almost everyone receives fewer doses in cycle 2 than in cycle 1)
• While she's a little more nauseous than last time, I don't think she's been throwing up and the rest of her gastrointestinal symptoms haven't appeared yet
• She's still really clear-headed
• She ate two more meals than last time. Cycle 1 she was done with food after lunch the first day. But this time she had soup and jello for dinner and a hard boiled egg and mango smoothie for breakfast so she got a little more nutrients in before swearing off eating.

The downs:

• She feels really lousy (Lousier than last time at this point) in the having a super flu sort of way.
• The chills have hit her way harder this time around. For 3 of the 4 doses she's gone into violent shakes and rigors. The first two times she had held off on narcotics and managed it just with being mummified with hot blankets but evidently for her 3 pm dose she needed Demerol to try and bring them back under control. That knocked her for a loop for awhile but it sounds like she's feeling a little better now (approaching 8 pm)
  
• She has some sort of weird pins and needles pricking sensation all over her body that actually aren't on the normal list of side effects.

Her blood pressure is hanging in there, though it did have one super low reading (80 something over 40 something) in the middle of the night. They boosted it back up however and were able to continue with treatment.

We haven't seen many of our favorite nurses from the last cycle yet but the new ones have also been really good. Today Mom was joined by her good friend Cindy who went through this treatment herself a number of years ago. So she's a wonderful person to hang out with Mom for a day or two. Not only has she been through it so she can explain/empathize but she's a fantastic inspiration and example of someone for whom IL-2 resulted in a complete response for multiple years (and counting).

They'll reassess her blood pressure and blood work over the course of the next few hours and decide whether or not she'll receive her 11 pm dose. Keeping fingers crossed that she is able to.

Thanks for following along. Knowing you're out there helps her a lot.

Becca

Kicking off Cycle 2

Mom's Healing Space is adding parts as we do each cycle...

We arrived at 7 am to find that Mom was in room 703 which is the mirror image of room 706. Everything that was on the left is on the right, etc and her bed is facing the opposite way. It's been more than a little confusing. It will be interesting to see how she navigates things once the neuro toxicity kicks in.

As before she spent the morning getting the baseline tests done and having the central line put in. She also had what was likely her last real meal for a week or so: an uninspired salmon poor boy sandwich. (While this place is top notch for care it lags a bit in the culinary department! Then again, what do you expect if you order a salmon poor boy from a hospital :-) )

She gets her first treatment at 3 pm and the roller coaster ride begins anew. I think this time we're going to try holding off on folks calling. If you want to get in touch with her you can do so by email (which we usually check together a couple times/day) or (if it's time sensitive, etc) by calling me at 503-277-3601.

Keep sending healing wishes and I'll do my best to keep you all posted.

Quiet Friday

Just wanted you to know that all is well. I am getting stronger each day. Sophie and I walk a little farther each time. Enjoying being at home alone and on my own schedule. Sunday, I pack up and head up to Portland. I am back in the hospital at 7 am on Monday morning to start the second round of IL-2. Everyone says that the side effects get worse with each round. We will see.... Becca will keep you all informed as she will be posting for me next week. Keep sending me all your prayers and healing thoughts that this treatment is working. I will need them all!

Home At Last

It is SO nice to be home. My own bed felt SO great last night and I slept in until 8 am. Came home to find my car battery totally dead...thank goodness for AAA. They had it going in 45 minutes. Susie was so nice to drive me down in the pouring rain, spend the day with me and then drove back up to the airport after a delicious Thai meal at my favorite little Thai restaurant.

Sophie and I took a really ambitious walk this morning so I think I am going to take it easy for the rest of the day.

Probably will only post again on Thursday as all is going well. SMILEs to all.