Second Day Home

Sorry, not very creative titles right now. We spoke with Dr. Glotzbecker in Boston about an hour ago, 6:30pm. (Yes that's right CE people, Dr. Glotzbecker's husband and Melissa Glotzbecker's husband are third cousins). She was not as concerned about Linda's constant nausea as we were. She said one day was not unusual, but that after two days we should be much more aggressive with the anti-nausea medication, alternating the Compazine and the Ativan every 3 hrs round the clock, and the Zantac every 12 hrs. They gave us these pills and we should be using them, she said.
She was also relieved to hear that Linda was drinking and processing lots of water, which meant her kidney function was returning to normal. I guess we'll push the nausea meds and try again in the morning.

Luv ya,

Linda and Jim

First Day Home

Well, we'd like to tell you that Linda's feeling a lot better, but that 's not the case. She's feeling a little better, with the emphasis on "little". There have been several bouts of nausea today and last night, which not only makes it difficult for her to get any of her strength back, but also makes it difficult to keep track of which medications are staying down. She's had lots of nasal congestion which none of the doctors listed as one of the side effects, so we wonder if it isn't just good old Cincinnati seasonal allergies. Whatever it is, it's preventing her from breathing through her nose and getting a good night's sleep (or an afternoon's sleep for that matter.) Sudafed didn't work, but a nasal spray seems to be providing some relief. We'll find out for sure tonight.

We're sorry we didn't thank everyone for the cards that were sent to the hospital, but that's because they never arrived. At first we thought it had something to do with the bone marrow patients, and not bringing anything in from outside, but on the last day, we asked about it, and the nurses said they should have been delivered. We're sure the address was right, because a FedEx package arrived with a necklace (thanks Vicki and Charlotte.) They said the mail may have gotten stuck at the clinic and they'll try to retrieve it before our return. If only this was the biggest of our problems.

Linda's lungs still have some fluid, and between this and the nasal congestion, breathing is a full time job that she has to think about and not take for granted. On the plus side, we actually walked outside for a bit today, if only to the other side of the circle. Once she starts holding solid food down, things should start looking up.

We hope to have better news tomorrow.

Love ya,

Linda and Jim

Home Sweet Home

Hi everybody, Jim here. I said we'd post later so I thought I'd better check in. It's 11:30pm (I don't know why that stupid time marker at the bottom of the post is always off, but it is), and Linda is finally resting comfortably in her own bed, as I will be shortly as well.

I'm sure we have the reputation at Beth Israel Hospital as the "last minute panic family" after today. At 9am Linda's oxygen saturation level was still only 92% even with 3 l/min of oxygen going in her nose thingee all night. Once again everybody was telling us that we would be staying another day. Linda still had fluid in her lungs causing the low O2 levels, and the Lasix (now being given orally since the line had been removed) would not act quickly enough to decrease the fluid levels. They could administer it through a seperate IV, but the Nurse Practicioner said excessive urination might result, which would not be good for a plane ride. On the other hand, traveling with low oxygen saturation levels could cause respiratory distress on the flight home which would not be good either. Better to wait until tomorrow. But after everything that happened this week, we knew better than to cancel the plane reservations. Around 11am Linda used the restroom for the umpteenth time, and we forgot to put the O2 back on (the line doesn't reach to the restroom). It had been off for 15 minutes when Dr. McDermott showed up. Everybody decided, what the heck, let's check the O2 again. With everybody in the room (McDermott, Virginia the NP, Gretchen the nurse), she registered 94% with no O2! So Dr. McDermott suggest gettting out of bed later on and checking it once more as she's walking down the hall. So around 1pm we do just that, and Gretchen now gets a reading of 97%. We finally get the all clear sign, and Virginia started writing all the prescriptions for home (seven of them), Gretchen started writing the discharge instructions, and I started throwing everything in suitcases. (I swear, after a week it looked like a family of gypsies had moved into the room. Come to think of it, that's about what happened.) Hugs all around for everybody as we leave.

The trip to the airport and the plane ride home on one of Comair's toy airplanes were not the most comfortable for Linda, but she made it without incident. If only we had thought to take some anti-nausea medication before we left the hospital. We finally pulled on to Trestle Drive around 8:30pm, and another Good Samaritan Neighbor (Cindy Enger this time), stayed with Linda while I ran to the pharmacy to fill the prescriptions. Our front porch was already decorated for Halloween, with lit Jack o' Lanterns, flowers, and balloons strewn about, and the lawn mowed. (We don't know who to thank yet, but Trestle is like Wisteria Lane, secrets don't keep forever.)

It hard to believe we only get 5 days of recuperation before we head back to Boston next Monday to do this again. But if it works, it will all be worth it. Sometime over the next few days, I'll try to explain what the IL-2 treatment is expected to do. But not now. Now I'm going to bed. I'll let you know how Linda's doing in the morning.

Thanks everybody, your friendship means the world to us.

Linda and Jim

O Happy Day!

We're outta here! It was touch and go with the blood oxygen levels but it's 1:30p and we're leaving for the airport. More later tonight.

Love ya,

Linda and Jim

Slowly but surely

Sorry this post is so late, but Google's blogger service was down earlier.

So it's been a day of slow improvement. Linda ate a little real food for breakfast, the first time in 3 days (thanks to Dunkin Donuts). The hardest part of the day for all of us was when Andrea left at 11am. But by then at least Linda was able to get out of bed. Around 2pm they disconnected her from the constant IV drip and gave her Lasix to start reversing the fluid retention problems. There was still fluid in her lungs, so she still has oxygen to keep her blood oxygen level up. At 9pm, they've decreased the oxygen flow and the plan is by the morning it will be off completely. The other big problem right now is just being weak from lying in bed most of the time. We've taken to strolling down the hallway occasionally with a portable oxygen tank to build up her strength for the walk through the airport tomorrow (I'm sure she's going to refuse to get a wheelchair). Then lots of napping in the afternoon, and a real dinner.

If anything, Linda's getting a little impatient that it's taking longer than she wanted to start feeling better. We're really looking forward to getting on that plane tomorrow.

Love ya all,

Linda and Jim

Andrea, thank you so much. we don't know what we would have done without you.

She made it to 11

Last night, Linda's symptoms multiplied and became more severe. You know that description of IL-2 treatment that we mentioned, "Like the worst flu you'll ever have"? We finally found out what that meant. Shortly after the 10th dose at 4pm Saturday, Linda started having breathing problems. The fluid retention that had been going on started causing fluid build-up in her lungs. Her respiratory rate was in the 35-40 bpm range. She was getting very uncomfortable, so they started her on oxygen. Her bicarb level was dropping too, and they added that to her IV. She also started experiencing some of that itchiness we were warned about. So with all the nausea and diarrhea on top of everthing else, and her BP down to 92/50, Dr. McDermott recommended skipping the 11pm dose.

At 6am she wasn't feeling much better, so Dr. McDermott said to hold the 7am dose until he could personally assess her. He came in a little after noon today, and by that time her BP was back to 123/78 and her breathing was back below 30 bpm. He said he would recommend one more dose, but since the symptoms would likely return, that would be enough. 11 doses was a lot according to him, and he is satisfied when patients get at least 10. Despite her evident distress, she told the doctor she was ready for another one, and she took her eleventh dose at 1:15pm.

Through the night and all day today, Linda has been in obvious discomfort, but has never complained. She's insisted on getting up to walk around several times today even though she can only make it 50 ft or so, because the doctor said it would help clear the fluid in her lungs. She's been a real inspiration to us, as always.

It's about 6pm, and she's resting, but not exactly comfortably. We're all looking forward to the symptoms subsiding, as they hopefully should later this evening or tomorrow. Monday should be a day of recovery and we hope we get to make the 4pm flight home Tuesday. It will be nice to be back with family and friends, although thanks to Al Gore and his Internet, it's like you've been with us through it all.

Luv ya,
Linda, Jim & Andrea

Ten doses down, four to go! (hopefully)

Hey everyone, Andrea here. Mom's sleeping. It's Day Four of treatments and things are still going relatively well. She has not yet had to miss a dose and the expected side effects still haven't been too bad. She continues to maintain her normal positive attitude, and has shown temendous strength and will-power. She is determined to get in as many doses as possible to improve her chances of having a positive response to the treatment. Everyone out there who is pulling for her owes her a BIG "thank you!" when she returns to Cincinnati, as she is going through all this for all of her loved ones as much as for herself.

On to the side effects: IL-2 causes capillary leakage and temporary reduced kidney function, which causes weight gain and skin redness and irritation. For all of you who have always wanted to fatten her up, Linda currently weighs 14 pounds more than normal! (Don't get too excited, it's just fluid and she'll lose it fast). Her skin is glowing like she has a sunburn, but so far the expected itchiness has not been too bad. The nurses keep telling us to look out for strange dreams, as hallucinations caused by neuro-toxicity are one of the reasons why some patients have to skip a dose of IL-2. Linda keeps telling them that she always has funny dreams, so that would not be unusual for her!

It seems that the most frustrating thing for her so far is not having an appetite at all, despite taking medication for nausea. She wants to eat, and really misses eating, but doesn't have much of a stomach for it. If we can time it right and she can eat soon after taking her nausea medication, she has been able to put down a few bites. On this topic the nurses say to eat as much or as little as she wants, and not to worry if she doesn't eat. Most IL-2 patients don't eat much during their hopital stays.

This morning Linda said that as bad as she felt, she actually felt better than she did when she first arrived at the hospital. However as the day has gone on, it's now getting to be neck and neck.

Jeff and Fran, college friends who now live in Boston, stopped by for a visit today. It was great to see them and have other visitors in the room besides the nurses!

Linda is still sleeping a lot (which is very good for her), but today she also has felt up for playing Yatzee and Set, finally finishing that movie (thanks David T), and writing a thank-you card or two. She also enjoyed the CD you made for her, Susan. Thanks!

To everyone: Thanks again for all of your love and support. It gives strength to us all.

Linda checking her blog

Two of Linda's nurses, Amanda and Gretchen