A "Little" Scare

Yesterday was looking to be a normal day. I was finishing up some work and Adrienne decided to take a shower before we took Curt's car in for some repairs, followed by a casual dinner on the strip. Suddenly, Adrienne came into my office and her entire left arm and shoulder were literally blue, hypoxic blue. I called the clinic immediately and they told us to go to the closest ER. It took a little while for Adrienne to get dressed and the "blue" had subsided by the time we got to the ER, in about half an hour. After a full battery of tests, including an ultrasound of her arm and the veins in her neck plus a chest CT, they didn't come up with anything except for some pneumonia in the right lung, which we know is tumor and not pneumonia. After talking with all of her docs this morning, the consensus is to keep an eye on her and go to the ER if it happens again. Dr. O thinks it might have been a transient blood clot, which makes sense. Normally, they would prescribe blood thinners as a precaution but she can't have them since the chemo will lower her platelets. Adrienne's arm is still hurting today and she's quite tired, but otherwise seems okay.

2008 wasn't our best year. Here's to a new year and more good fortune in our home and yours.

How is Adrienne?

I wish I knew the answer to that question. While Adrienne's pain is much better, she's been feeling achy and short of breath. We'd like to do something to make her feel better but it's hard to know what to do. She's being a trooper, though, and we had a nice dinner last night. We all decided to forego gifts this year and shop the after Christmas sales, including a new cell phone for her. She'll get labs done this afternoon but I'm not expecting any big surprises.

On Christmas day, we decided to go see "The Curious Case of Benjamin Button." It's by far the best movie we've seen in a long time and I highly recommend it. Just be sure to bring plenty of tissues.

We're back to New York for chemo on January 12-14 and then Adrienne goes back to CMC to finish up her senior year. Wow, it's hard to believe.

Home at Last

I want to apologize in advance since I probably won't be getting holiday cards out this year. Thank you for sending them to us. We really enjoy them but it's just enough to keep up with things here right now. Curt is taking the next two weeks off work so hopefully that will help a bit.

Adrienne is feeling pretty lousy this morning with nausea and bone pain from yesterday's Neulasta shot. She's parked on the sofa, tanked up with meds, and hopefully will be feeling better soon. The dogs seem to know when something is up and they're hanging out close to her. The good news is that the pain from the tumor in her ribs/chest wall/lung is gone, yep gone, since a day after the first dose of Bendamustine. It seems almost too good to be true but I saw Dr. O in the hall on Wednesday afternoon and he said it could work that quickly. Let's hope.

The progression of her disease really caught us off guard. With a CT two weeks ago, I thought we could skip a PET/CT in New York but Dr. O wanted one on Monday before she saw him. The amount of progression in just two weeks was astounding after the last couple of years with relatively slow growth. There were three new tumors in the mediastinum; new bone lesions in the spine, hips, and scapula; and the little 1.5 cm tumor between the ribs turned into an 8 cm tumor joining with a now larger left pleural effusion. Clearly, immediate action was needed and Dr. O and his staff jumped right on it. I liked him before...I love him now. Adrienne says loved him all along. :o)

I want to wish everyone a Happy Hanukkah and Merry Christmas and New Year. We can only hope that 2009 is a better year. Adrienne is on track to graduate from college in May and nothing will make us all happier.

Snow in Las Vegas?

I thought you might enjoy some pictures of our backyard this morning, two days after the snow. It gets really cold here in the winter but there usually isn't enough humidity to cause a snowfall.

Bendamustine it is

Yesterday was a ridiculously long day so we slept in a bit this morning. The long and short of it is: Adrienne will start bendamustine today with another dose tomorrow. This drug is FDA approved but not for Hodgkin's so they're working on the insurance issues this morning. She'll get it every 3-4 weeks for up to 6 cycles or as long as it's working. Dr. O'Connor has several other drugs after this one, so we're happy to still have options.

We found out that all HDAC inhibitors like MGCD can cause this rebound effect. The HDAC inhibitors inhibit cell growth and when you go off, the cells can grow even faster. Adrienne has significant progression even since her CT two weeks ago and her pain was really bad last night. There's a large tumor that extends from the left lung, through the chest wall, and between two ribs. This may have fractured one or more ribs so she'll have an xray today to check. Hopefully the bendamustine will get rid of this quickly without radiation because the radiation would have to include the left lung, which could be dangerous.

Off to NY

We leave bright and early Sunday morning for New York. Adrienne has a PET scan Monday morning and we see the doctor that afternoon. Our plan is to walk out with a treatment plan or maybe even to start treatment this week. Her pain seems worse almost on a daily basis, which is a bit unnerving. We saw the radiation oncologist yesterday and she thinks she can radiate this one area but there is a concern about her lung, which would be in the radiation field. We also don't want to do radiation if it would prevent other treatment so we have some tough decisions to make.

We found out this week that the MGCD/Vidaza trial that Adrienne was on was discontinued by the drug manufacturer so it wouldn't have been available to her anymore, regardless of the cystitis.

Adrienne was happy to finish exams on Thursday but has been really tired. The pain meds are adding to her fatigue. She got a procrit shot this week to raise her red count so hopefully she'll be feeling better soon. Getting rid of the cancer would help too.

Thank you

Thank you, everyone, for your outpouring of love and support. We've received so many messages and just haven't been able to respond to every one. Just know that it really helps us to know you're there. Adrienne reads every comment, so don't hesitate to leave a message. Sometimes people leave anonymous messages without a signature. If you don't have a blogger login, please be sure to sign your name so we know who's visiting.

Adrienne's pain continues to worsen. There's a node between the 8th and 9th ribs that's causing the main problem. Though small (2cm x 1.5cm) it's pushing between the bones. She also has a pleural effusion that causes shortness of breath. She was taking a continuous release morphine, which helps both problems, but that made her itch. Now she's alternating between Vicodin and Oxycodone every 3-4 hours but she still has breakthrough pain so I have a call in to the doctor to find a better alternative. She has finals this week and seems able to get her work done, plus she says studying takes her mind off Gus. We've been sharing memories of him the last few days and that helps a lot. Prince seems to have a new lease on life since his surgery so we hope that lasts awhile longer.

We leave for New York on Sunday. Adrienne has a PET scan Monday morning and then she sees the doctor in the afternoon. We really need what I call "the Owen O'Connor pep talk" right now, full of hope and options.

And the bad news continues

Adrienne had a CT yesterday and we got results this morning. Not good news...lots of progression and several new lesions. This all explains her pain and shortness of breath. We sure hope Dr. O has something wonderful to offer. We're also looking into radiation to palliate her pain. She's taking it in stride, telling me not to panic. Easier said than done.

We all miss Gus terribly. He was such a special puppy and we were looking forward to many more years with him. Caesar seems confused since they were good friends, playing together for hours on end. We'd like to get another puppy but are worried about what viruses are around here and being in NY a lot in the coming months so we'll have to wait for awhile.

We are devastated

Adrienne woke up early Saturday morning to find Gus vomiting on her bed. She slept the rest of the morning on her floor while he slept in his crate, and then we took him to the vet after the vomiting didn't stop. After a rough and tense day, Gus died yesterday afternoon. The neighbor's puppy has been coming into our backyard and we think he has either parvovirus or some other similar virus. Even though Gus was vaccinated, puppies can still get it until they are about 8 months old. Needless to say, we are all devastated. Gus quickly became a very important member of our family and brought us much joy. Adrienne is inconsolable. On Friday, we also found out that Prince has an incurable cancer and will probably pass away in the coming months. We all remember how tiny he was when we got him, the runt of the litter, and he's been a wonderful family pet for more than 12 years. Unfair just doesn't begin to describe it.

Add to that, Adrienne's pain continues. We are pretty sure now that this is not a kidney stone but some other problem either related to her Hodgkin's or possibly a kidney infection from her cystitis. We'll try to push her scans up to this week to get some answers. She's gone from taking vicodin to oxycodone and now tramadol for the pain.

Off to NY

We have plans to go to New York on December 14, seeing the doc on December 15. We got a spot at the new Hope Lodge, so that should be fun (and free). Adrienne will have scans on Monday, December 8, and we'll take the CD and report with us. I'm not sure how I feel about these scans so we'll take it a day at a time. So often it feels like our life is dictated by scans but at least they don't cause as much anxiety as they once did.

Adrienne is having intermittent pain from the kidney stone but was able to take herself to school today. The docs originally thought that it was small enough that it would pass on its own but obviously that hasn't happened. We'll just have to take it a day at a time.

Prince is home from the vet. He's moving in slow motion but seems mostly okay. The other dogs aren't quite sure what to do with him but they seem to be leaving the incisions alone. He has an enormous cone and has trouble getting through doors, which is quite funny. Earlier it sounded like a gun shot when he ran into a door frame, poor guy.

You won't believe this

I finally talked to Daniel about midmorning. When he heard how worried I was, he matter of factly said, "mom, the fire's out." There was a voluntary evacuation where he lives and while some people left, many stayed including Daniel and his roommate. Everything is fine and even the air is starting to clear.

My car is in the shop today so Adrienne drove herself to school. She called in the afternoon crying as she was in pain, the worst she's ever had. Curt picked her up since he works near UNLV and my car was still in the shop (and still is this evening). It looks like the kidney stone that's been in her left kidney for more than a year has started to move. It just seems so unfair to have to go through this now. We have a good supply of vicodin, which is helping this evening, but we'll have to get morphine if the pain gets much worse.

And, Prince has his surgery tomorrow. I'm very nervous about this and have concerns about putting him through it, but the rest of the family feels that he's up to it. He'll be in doggy ICU for a day or two and we hope he can come home late Wednesday or Thursday afternoon.

A Plan?

It looks like we'll be headed back to New York in December. Adrienne really hasn't had treatment since early October and we don't feel comfortable waiting for months to start another trial. I've been talking with Dr. O's office and they have a plan but I don't know the details yet since we played phone tag on Friday. I should know more Monday or Tuesday. Adrienne has been tired and has a cough, which is always concerning, but she's keeping up with school. She's eating a bit better now too with the help of mom's (that's me) matzo ball soup, Jewish penicillin as someone told me. At least she loves it.

Daniel lives in Santa Barbara. They evacuated just two blocks from his house but he's in an area with a voluntary evacuation. I told him to get out at the first sign of trouble and he promised he would. He's renting and has renter's insurance so there aren't any worries on that end but it's still quite scary when you watch the fires on TV.

Prince is having surgery on Tuesday. I'm nervous about it because of his age (12 years old) but he's always been in good health and Shelties can live a long, long time. He has just one large tumor that's attached to the liver at one point and the vet says most dogs do well after the removal. Still, he'll be in doggie ICU for a day or two. We hope he'll be able to come home on Wednesday afternoon.

Inconclusive pathology

I guess it's just as hard with dogs as with people. Prince's pathology came back with dysplastic spindle cells, which is a type of sarcoma, but there weren't enough cells to be sure. He seems happy, back to himself right now, eating and drinking well. Tomorrow, we're off to see the specialist to figure out what to do next. From what I read, they generally cut this type of cancer out unless it's too widespread, in which case there's nothing they can do. Even if they cut it out, it usually comes back within 6-12 months so we have some decisions to make.

Adrienne's cystitis is getting better, but overall, she's feeling worse with headaches, coughing, and shortness of breath. She's hardly left the house in days except to go to school or the clinic. Her labs and creatinine look good so those aren't responsible. I just hope this is something viral. I was fighting a really bad headache last week and she had it over the weekend so that makes me think she caught something from me. I'm trying hard to coax her to eat but she eats very little and is down to 101 pounds on her 5'5" frame. Her clothes are literally hanging on her. I always try to be positive but I'm definitely feeling a bit down right now. Let's all hope that this rights itself soon and she feels better.

It's not to be

Adrienne restarted the MGCD yesterday along with IV hydration. Her cystitis symptoms started within a few hours and have gotten progressively worse today so that she's taking Vicodin every 2-3 hours and passing tissue in her urine. We just hope that it doesn't escalate to the level it was before with large blood clots. It's like when you have a cut and it scabs over, then you do something to knock the scab off. Needless to say, she won't be continuing on the trial. We don't have any plans yet but hope that she can take a few months off to recuperate before starting another trial.

We had another scare today with Prince who's been a bit lethargic, not eating for a few days. We took him to the vet (they're open on the weekends) and at first it looked like he had a big tumor in his liver. Now it's looking like a cyst but we won't know for sure until the pathology is back on Monday. We're hoping that this can just be drained, but it's quite large, doubling the size of his liver and pushing on his stomach, poor boy. The vet wanted to keep him for IV hydration but we decided to bring him home because we thought he'd be happier here. He ate a little bit tonight though we're having trouble getting fluids into him. At least he doesn't seem to have any pain.

Here's Prince (on the left) and Caesar. Prince is 12 years old now but still walks 3 miles most days.

Treatment Restarted

I'm just posting a quick note since it was a really long day. Adrienne was able to start chemo again today but her BP was very low so she had to stay for fluids. Add to that, the lab was really slow so they couldn't order chemo until they were back. Her creatinine is still a bit high but it came down enough for treatment. And good news today, Bekah's trial with LBH589 is working!!!! Go Bekah.

"The Plan"

I put "the plan" in quotes because things are still up in the air. We had a long talk with Adrienne's onc on Wednesday with the intent to go back on the trial, adding IV hydration twice a week, while watching things very closely. At the first sign of trouble, the plan is to go off. After this discussion, we reviewed Adrienne's labs and for some reason her kidney function was way up (up is bad with kidney function). She got hydration yesterday and today in hopes that her numbers come down but it's possible she won't be able to start treatment on Monday no matter what, and then she's off the trial permanently.

Of course, we discussed next steps if she goes off the trial. Both her onc here and her onc at City of Hope think chemo is a bad idea, that it will only suppress her marrow, and give her no benefit in terms of reducing her disease. In all probability, we'd choose to stop treatment for awhile and then enroll in another clinical trial when her disease starts to grow again. SGN-35 is showing great promise but they aren't allowing patients with allo transplants and they aren't granting compassionate use applications. But you know me, I'm not going to give up that easily so I'm working on a strategy to put pressure on the company to give Adrienne the drug outside of a clinical trial.

Otherwise, things are fine here. The weather is absolutely gorgeous and Adrienne is feeling well enough again to get out. School is going great for her although she misses the challenge of CMC. Daniel has recovered from his dog bite and the dog is now in "pit bull rehab." The other choices were to put the dog down or keep him in a full body muzzle. Hopefully this dog won't hurt anyone again.

Biopsy Results

A lot has happened today. This morning, we found out that Adrienne has to restart the trial by next Monday or she's out so preparations are being made furiously to get her started again. This afternoon, I called the urologist about biopsy results. Originally they told me it would take 5-7 days but they were back today. The oral read was chronic and acute cystitis with ulcerations but no cancer (we didn't expect any but still it's nice to hear). While Adrienne is feeling better, we don't know if any healing has happened and we don't feel like we have a good understanding of the risks of restarting treatment. She sees the onc in the morning so we can decide. I told Adrienne it was totally her decision but she's afraid, of course, that things will get out of control quickly and she'll be as miserable as she was before. I've written about her problems at a fairly high level, but suffice it to say, this has been one of the worst, most painful experiences she's been through in her 12 years of cancer treatment.

Adrienne's onc at City of Hope says we should give it a try with mesna and hydration and hope for the best. If the symptoms even begin to reappear, then she should go off. That sounds like a reasonable option. I'm waiting to hear back from her onc at Stanford/LPCH. I'll write more tomorrow after all the opinions and plans are in.

Biopsy done

Our morning started a little rocky with a dead battery but luckily there's an extra car here. Apparently car batteries don't last long in the desert. Now we know why Adrienne's car went through a battery in just a year too. My car is running okay now after a jump but it will probably need a new battery soon.

Adrienne is doing fine after the biopsy and is feeling pretty good already except for some unexplained itching. Her urinary symptoms are much improved over the last few days but the doc said her bladder didn't look any better than it did 10 days ago. I'm not sure what that means but he said she probably needs two more weeks before restarting the MGCD. Adrienne really wants to get back on it but only if they can do something to protect her bladder. The onc says they can try mesna and/or IV fluids but of course there are no guarantees that this will work. Biopsy results will take about a week and then we can decide if and when she'll restart the trial.

They Talked!!!!

Adrienne's onc (Dr. Dang) and the urologist (Dr. Leo) touched base this morning. While Dr. Leo thinks this is cystitis, he can't be sure that she doesn't have bladder cancer. Oh great. We don't for a minute think this is bladder cancer but we'll continue to play the game. Adrienne seems ever so slightly better, and if things continue to improve, she may be able to skip Friday's biopsy. We're just going to play it by ear for the next few days.

Saturday night was Light The Night here and the turnout was amazing. I had been to two in the Bay Area and they weren't nearly as large. They even ran out of balloons before we got ours, but all that matters is that the fundraising was successful. Gus came along too. I don't know if he enjoyed himself but the socialization was good for him, and he laid in Adrienne's lap the whole time while we ate dinner. He's such a good puppy.

"Chemical Cystitis"

Aha, finally we seem to be zeroing in on Adrienne's problem. The Medical Director with the study sponsor (Pharmion) says “that we have seen cases of chemical cystitis.” They are leaving it up to Adrienne's doctor to decide if she can stay on the trial and he wants to keep her on it. Now the goal is to figure out how to get this to clear up as quickly as possible so she can go back on the drug. I've asked the urologist and oncologist to talk to each other (what a concept!!!) to see if there's anything we can do to treat this. We'd like to skip the biopsy and go straight to treatment if at all possible. Stay tuned.

UPDATE: A couple of people have asked why Adrienne can't stay on MGCD and deal with the cystitis at the same time. The problem is there's no way for the cystitis to resolve while on it. The cystitis is very dangerous as the urine can "leak" out of the bladder into the surrounding tissue and cause sepsis.

You asked for pictures of Gus, so here goes.



Adrienne and Gus taking a nap together.



Poor Gus with his cone.



Caesar and Prince finally decided that Gus could stay.



Caesar stealing Gus' toy (notice the bandages on Gus' legs from the dewclaw removal)

Cystoscopy - More Tests

Adrienne had the cystoscopy this morning. I won't describe the faces or noises she made, but I gather that it was quite unpleasant. She's feeling better now and went off to school on her own. When I say better, I mean better from the procedure, but not better from her bladder symptoms. The doctor actually showed me the inside of her bladder on a TV monitor. Some of it is normal but much of it is red and inflamed with some fungus looking stuff that I don't know how to describe. He seemed a bit perplexed but I think that might just be his natural demeanor. In any event, the next step is a surgical biopsy on Friday, October 23. At least she'll be asleep for that one. They're also running urine cultures to see if there's some other infectious process going on besides bacteria. In the meantime, Adrienne is off all treatment and will not be able to continue on the MGCD in all probability. What's next? I wish we knew but, of course, we're looking into other options.

Gus has been truly entertaining lately. He's up to a whopping 4 pounds but he acts a lot bigger. Curt calls him the house terrorist because he barks at the other dogs and then runs under the furniture where they can't catch him, making us all laugh. Last Friday, he was neutered and had his dewclaws removed. Now he's walking around with a cone that's bigger than he is. The vet's office also says he's adorable and they carried him around all day, even taking pictures. Adrienne is madly in love as are all the rest of us.

Postponement

I found out this morning that MGCD does, in fact, cause cystitis (thank you Susan for pointing this out). After several inquiries, the decision was made to postpone Adrienne's treatment next week until we find out exactly what the problem is with her bladder. She sees the urologist on Wednesday for a cystoscopy. Worst case...the MGCD is causing hemorrhagic cystitis. If it's caused by the MGCD, she probably won't be able to continue on the trial. Hopefully, this is something treatable and she can continue because this drug is working well for her. Still, she can't live with these bladder issues.

About the Same

Adrienne is doing about the same today but she took herself to school as she had a midterm in her bio class. Daniel, on the other hand, is the proud new owner of a handful of stitches, 9 of them, from a bite from a pit bull. Daniel thought he was playing but the dog is so big and powerful. Daniel has pain but hopefully the vicodin will take care of it. He feels bad that he had to report the dog but it's the law. We don't know what will happen next but California has pretty strict rules about dogs that bite.

No fistula?

Yesterday afternoon, Adrienne started to have trouble with the catheter again so I removed it. Luckily, the nurse in the ER showed me what to do the night before. Adrienne felt pretty awful yesterday so she skipped school. This morning, she saw the gyn and he doesn't think it's a fistula and wants her to see the urologist again. Frankly, this is getting old. Adrienne isn't feeling any better but at least we're getting better at managing her symptoms with pain meds and so on. The urologist appointment is next Wednesday. Let's hope we get some answers.

ER Visit

Thank you for the all the nice e-mails and comments. It really does help.

Adrienne got the catheter late yesterday afternoon and was very, very uncomfortable, more than seemed normal. Getting it in wasn't too bad but then she had pain with it and leakage. Finally, at 10 pm, after I couldn't reach anyone at the doctor's office, we decided to head to the ER. The ER closest to us was packed so we decided to head down the road to the same hospital we visited when Adrienne was bleeding last month. The waiting room was empty...my kind of waiting room. After much going back and forth, the catheter was removed. It turns out it was too small. Another one was inserted and then that one was leaking too. After three hours, the natural spasms you get from having it inserted went away and it was working correctly. We finally got back at 2 am to find Curt and Gus sleeping together. It was adorable.

Adrienne is feeling better this morning and things seem to be working fine. They did a urinalysis in the ER and her urine is full of bacteria as well as blood. So much for the last 10 days of antibiotics. She sees the doctor tomorrow morning. They're going to do a test where they put blue dye in the bladder to see if it comes out of the uterus, which would mean there's definitely a fistula there but we may continue with this conservative management. Hopefully this catheter will continue to function normally.

Conservative Management for Now

We have a bit more news this morning. The gyn wants to try conservative management (catheterization) before doing surgery to see if the problem can resolve on its own. We're also trying to get Adrienne's radiation records to see how much radiation this area received. Her ped onc thought that this area was totally shielded but there's always scatter so I have a message into her rad onc. We should know more after she sees the gyn on Wednesday and has yet another test. Otherwise, this latest course of antibiotics has helped a bit so at least she's more comfortable, not happy about having a catheter, but she definitely prefers that to more surgery.

Vesico-uterine fistula

After posting yesterday, I was able to talk to the PA at the gyn onc's office where Adrienne had her surgery in early September. They are fairly sure that she has what's called a "vesico-uterine fistula." There is little information out there about this as it's a rare complication that usually happens with C-sections in developing countries. Great! It appears that Adrienne's rare combination of chemos and radiation and possibly the clinical trial drug made her susceptible to this. Basically, there's a lesion between the uterus and bladder so the fluids go between these two organs. The doctor's office wanted us to go to the emergency room to get a catheter right away. Adrienne declined vehemently so she has an appointment first thing Monday morning for the catheter and will see the doctor on Wednesday. As long as she doesn't get a fever, this isn't an emergency and we'd prefer to avoid an ER full of sick people. I expect that she'll have surgery on Thursday, probably a hysterectomy and repair of the bladder. If this can be done vaginally or laparoscopally, she should be able to stay in school. However, I'm not sure that we should do this here in LV and we may decide to go to Stanford. I have a message into her onc there asking for his opinion.

Adrienne is pretty miserable right now but is hanging in. It's just so unfair that she has to go through this now.

Good and Bad

I love the radiologist at NVCI. He watched while Adrienne had scans today and then called right after comparing them with the last ones. The good news is that her disease is stable, the same in the lung and a little smaller in the spleen with no new disease. We'll take it!!! The bad news is that there's a definite problem in the uterus and bladder. He suspects a tear or leak between the two so there's blood and urine going between them. No wonder Adrienne is having so much pain and strange bleeding. Since she doesn't have a fever, this isn't emergent but still important to resolve. I suspect that Adrienne will be having more surgery soon and will post as soon as we know what's up. She definitely needs a break.

Scans Upcoming Again

Adrienne's bladder is worse again so we're trying to get some more tests arranged. It's possible that there's some additional injury to the bladder or it just might take more time. She's due for scans next week so we're trying to push them up to this week so she can have the cystoscopy, where they go in and look at her bladder. They say it isn't that bad and women are better about it than men. Let's hope so as she really is not looking forward to it.

She had a chest xray last week due to the shortness of breath and there's no change since the last xray, but that was when she had pneumonia. I'm not sure what that means but we're hoping for the best since pneumonia can show on an xray for a long time after symptoms have resolved. Otherwise, her breathing seems a bit better the last few days.

We saw Daniel over the weekend and he's doing fine except he really needs a haircut. :o) You'd think he'd figure out by now that he should get one before I visit. The weather was nice and we enjoyed the City Hall area, which is one of the original buildings in Santa Barbara. Daniel's dog, Herbert (named after my dad), are doing well. Gus is doing fine too.

Thankful

People ask me all the time how I do it. How do I handle having a daughter with cancer for so many years? While I admit to feeling sorry for us from time to time, mostly I'm thankful that Adrienne's still here with us doing a lot of the things that a normal 21 year old would do...going to school, watching movies, going shopping, and so on. Sure, it would be great to spend less time with doctors and more time feeling good, but we know so many children and adults who have died and we're extremely thankful that Adrienne is still here. I think her biggest wish is just to be normal and live a long life.

I hope you'll go to Jennifer Willey's blog (http://www.jenniferwilley.org/) and leave her message. Even though Jennifer has terrible GVHD from her allo transplant for Hodgkin's, she still is thankful for many things in her life. Her mom wrote a blog entry this weekend that I hope I never have to write.

The last few weeks have been pretty tough. It began with the bleeding and all that ensued over that week. Last week, Adrienne got quite a serious bladder infection. I found out that her urine was abnormal a few weeks ago but someone missed it and she didn't start on antibiotics until last week when she was in quite a lot of pain. The gyn who did her surgery said he put in a catheter for the procedure and that apparently made it much worse. Thankfully, she started to feel better yesterday so we hope she's able to avoid some quite unpleasant tests. Add to that, she's having some shortness of breath that needs some investigation. Sometimes it seems neverending.

At least she's enjoying school. Her psych professors are practicing psychologists who teach part time. They have many interesting patient stories and she likes that. While we were disappointed that she didn't get to go back to CMC, UNLV is turning out to be a really good experience. We also got word last week that CMC will waive one of the requirements so she should be able to graduate with honors in her major. All in all, we're still thankful.

Back to Normal?

What is normal anyway? Normal in our house probably isn't the same as in most houses but we're thankful for quiet days. I had surgery on my shoulder last Thursday, but as you can see, I'm typing so I'm very pleased. I've had trouble with tendonitis for several years but it all got much worse after my fall last year. We thought I needed a rotator cuff repair (if I did, I wouldn't be typing now) but I had a bad case of bursitis and impingement on the rotator cuff. There probably won't be any marathons this week but I'm thinking of doing the Las Vegas half in December. Stay tuned.

Adrienne is doing amazingly well. She starts the fourth cycle of the trial today and she took herself to the clinic for a checkup and her chemo, Vidaza. This is a very easy 10 minute infusion. Otherwise, we're working on her appetite with a new prescription for Marinol. She won't smoke or eat it but she'll take it in a pill :o) It's making her drowsy so she can't take it before every meal as prescribed but we'll try to work it in here and there. Gaining even 5 pounds would be helpful.

Adrienne seems to be enjoying school and is keeping busy with Gus. He's in his rebellious stage, not wanting to be picked up all the time, but mostly he's very lovable. His new game is barking at the other dogs and then running under the furniture where they can't catch him. It's noisy at our house but we're enjoying watching the mayhem. We think Prince had a seizure last night so we're watching him closely. He's 12 years old but, besides being gray, acts like a puppy himself. If it happens again, I'll take him in for a "senior checkup."

Stand Up to Cancer

I'm sure most of you watched the Stand Up to Cancer special on the major networks last Friday night. I wasn't sure what to expect but was impressed with Hollywood's support for this event. I've often thought that if we could get celebrities as involved with cancer as they've been for AIDS, we might make some more progress. I was pleased that they showed the many aspects of cancer, from people like Adrienne living with it for many years, to kids with these diseases, to the many people who are dying. My dad died of non-Hodgkin's lymphoma, my mom had breast cancer, her new husband had colon and prostate cancer, Curt's dad died of colon cancer, his mom died of lung cancer. It's depressing to think about and even more sad to live through it and watch people suffer. I've spent more than my fair share of time in hospitals and clinics, experiencing every type of suffering from these diseases. While I'm happy to see a united effort, I'm concerned that none of the money will go toward research into Hodgkin's. It's that orphan disease that affects so few that drug companies and researchers have little interest. At the end of the day, research dollars are spent on the big cancers: breast, prostate, lung. I get it that those affect the most people but, still, I'd like to see far more money going toward the diseases that affect few but still have a long way to go, especially pediatric cancers.

Adrienne is almost back to normal after last week's events. She took it easy over the weekend, slept a lot, and now feels nearly back to normal. It seems like another crisis has been averted, thank goodness. When you see young people living such normal and uneventful lives, it breaks your heart to see what she deals with on a daily basis. I'm so proud of her, determined to have as normal a life as possible. I hope others living with cancer can use her as an example and live each day to the fullest.

Phew!

Adrienne did great today and they were able to do the less invasive procedure. She may still need a hysterectomy but we'll deal with that when we come to it. The only strange thing was she almost stopped breathing when they gave her demoral so I had to keep talking to her. Tonight she is fine, eating a little bit, and not in too much pain. Thank you for all the notes and e-mails. It really helps.

A Quick One

I'm beat so this will be quick. Adrienne's bleeding really got out of control today and she could barely stand up this morning. Thankfully, she had an appointment with a gyn surgical oncologist first thing. He quickly ordered two units of blood, which she got today, and preop, with surgery tomorrow. Hopefully the surgery will be routine but there's a possibility that she will need a hysterectomy. We spent much of day discussing this possibility and getting used to the idea. Adrienne already has ovarian failure and her heart wouldn't support a pregnancy so this wouldn't change much, but it's still upsetting. Plus, she wants to do the least invasive procedure possible. We're doing our little trick, packing a bag, pretty much guaranteeing that she won't be staying at the hospital tomorrow night.

Missing Stanford?

Sometimes we really miss Stanford where you have everything you need in one place. Here in Las Vegas, sometimes we need to go several places to get anything done. When you add in referrals and insurance approvals, it can make life really difficult. Adrienne has had trouble with vaginal bleeding since the start of the trial. The onc told her to see a gynecologist, he ran all the standard tests including an ultrasound, and the answer was for her to double or triple her birth control pill, which is used for hormone replacement in her case. Adrienne started bleeding again 9 days ago. By Saturday, it was so heavy that I took her to the ER to get her platelets checked. In most places, you can go somewhere on the weekend just to get blood checked but in Las Vegas, you have to go to the ER. After a $100 copay and three hours of our Saturday afternoon, we found that her platelets were low but not that low and we were sent on our way with instructions to see the gynecologist on Tuesday morning (today). Adrienne had early clinic at NVCI and I had them call the gynecologist to figure out what to do. Sometimes, you get caught in the finger pointing where no one wants to do anything and that obviously isn't working here. The gynecologist said this was beyond him and they referred her to a gynecological oncologist. I'm not sure why NVCI can't help since they must have a few of those, but they can't. After waiting a few hours for a call about an appointment, I made several phone calls only to find out that no one can see Adrienne until Thursday afternoon. Not good enough. After a bit of begging, she now she has an appointment tomorrow morning (Wednesday). Her counts are low, not quite low enough for a transfusion, but low enough to make her feel pretty lousy. Hopefully we'll get some answers tomorrow morning.

Gus is still entertaining us. We've actually been weighing him on a kitchen scale (yes, he's that small) and he's gone from about 2 pounds to almost 3 pounds. Wow. We gave him a bath and trimmed his hair this weekend. Now he looks a little cleaner and still just as cute.

Adrienne's school is going well, a bit easier than CMC but still time consuming. CMC will accept all of her credits and she'll still be able to graduate in May, so we're all happy about that. Some friends of her's from CMC came by on the weekend on their way from the midwest back to school and we enjoyed some interesting political discussions. I thought Adrienne might be sad that she wasn't going with them, but she seems to be taking everything in stride these days.

A Good Week

Gus has been with us for about 10 days...so far, so good. Caesar and Prince (our shelties) won't play with him yet but they seem to have accepted that he isn't leaving any time soon. Adrienne started classes at UNLV today so I'm "puppy sitting" during the day, which mostly amounts to taking him out every hour to make sure he doesn't mess in the house. He's a pretty smart guy (as you'd expect from a poodle) and seems to be getting the hang of housebreaking quickly.

Adrienne did fine with her chemo last week and restarted the MGCD as scheduled last Friday. The GI side effects are pretty tough but she's handling it well with plenty of over the counter medications. She's fairly fatigued right now but hopefully that will improve as she gets used to the routine of being back to school.

HAPPY BIRTHDAY ADRIENNE

Today is Adrienne's 21st birthday, one of those special days for everyone, but even more special in her case. Tonight we're going to do a bit of eating, drinking, and gambling, which is sure to be fun. Tomorrow is Daniel's birthday but he has to wait a year for his drinking and gambling.

Wow, what a week. After the elation of the scans on Wednesday, we got a call on Thursday saying that Adrienne had to stop the MGCD until she has an echo (an ultrasound of the heart) and gets approval to proceed from the drug company. She had the echo today and everything is fine, as we expected. In fact, her cardiac function looks even better than it did on her echo last fall. She started her third cycle of the Vidaza today and should be able to resume the MGCD on Friday.

Daniel got a dog, a miniature Australian Shepherd, in Santa Barbara. He named him Herbert after my dad. We thought it was quite funny and wondered how my dad would have felt, but Daniel means it as the highest compliment. Since Adrienne is staying here for the fall semester, we decided she should have her own dog. Meet Gus, a 10 week old toy poodle who weighs a whopping 2 pounds.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Gone...almost all of Adrienne's cancer is gone. I think we're all still in shock (in a wonderful way) but we couldn't have hoped for anything better. There's still some cancer in her lung but it's much smaller and all the other lesions are gone. Thank you to the wonderful radiologist who showed us Adrienne's scans yesterday, comparing them to the previous scans from May. The only weird thing is that she had what they thought was an adenoma (a benign tumor) in her adrenal gland but it's gone too so that means it was Hodgkin's. Honestly, I was a nervous wreck leading up to these scans and lost a few night's sleep and more than a few tears. With the recent coughing and wheezing, I fully expected there to be a lot of progression and was looking into other options. Thank goodness for the news we received.

Adrienne is still having a few unpleasant side effects from the treatment but it's better than it was during the first cycle, much better than chemo, and her blood counts are much improved so she should be able to start cycle 3 on Monday. In the meantime, we have a lot of work to do to get her started at UNLV on August 25 with a little sojourn for her 21ST BIRTHDAY ON MONDAY. Stay tuned for another little surprise.

Lungs Getting Clearer

On Sunday, Adrienne found that her wheezing and coughing were improved. By last night, they were virtually gone. We are very excited, hoping this means that what she had was infection and not tumor. Isn't it amazing that we hope for pneumonia? Only people who live with cancer would think that.

Scans Next Week

Adrienne has a CT next Wednesday (August 13) and a PET scan on Friday (August 15). I expect that we'll get results on Monday (August 18), which turns out to be her 21st birthday. I'm not exactly excited about the idea of getting results that day but trying to get information from NVCI over the phone is really tough. They have an annoying rule where only the doctor can give scan results and he's not always available.

We're trying to prepare ourselves mentally for every possibility, at least I think we are. I know there are many parents who read this blog so you know how awful scans can be. These days, we've lowered our expectations but it still takes the wind out of you to get bad news. There are three possibilities that we're planning for: stability or improvement in her disease (yes, please), slight progression, or significant progression. If it's the first, Adrienne will stay here and continue on the trial. If it's the second, she'll return to CMC and either go on another trial or on maintenance chemo at City of Hope. The third possibility is tougher and we aren't sure what to do, nor do we agree on the best option. As usual, I'm trying to get opinions from her docs who often don't agree with each other either.

After last Monday's xray, I contacted Adrienne's docs at Stanford and City of Hope and both agreed that you can't tell much from an xray. It's possible that Adrienne has a partially collapsed lung or pneumonia, and it's also possible that everything they're seeing is Hodgkin's. Hopefully next week's scans will provide more clarity but sometimes they can't tell from the scan either. She is continuing the antibiotics but, honestly, I can't hear any improvement. She coughs a fair amount in the morning after being prone but it gets better as they day goes on with things moving around. The wheezing sounds the same to me though she thinks it's improving a little bit. I don't think any of us knows what's going on.

SOME GOOD NEWS: ADRIENNE IS OUT OF THE BOOT AND HER FOOT FEELS GREAT.

Yesterday, we went to UNLV to file some paperwork so Adrienne can take a full load of classes if needed. On the way over, there was a flash flood warning on the radio. We get those all the time but rarely even see any rain come our way. As we were leaving UNLV, the rain started coming down like you've never seen and there were 1-3 foot puddles within minutes. Luckily, I drive an SUV so we felt a bit safer but it was still scary and kind of interesting too. We had another stop to make at UNLV but the parking lot was under water so we decided to bag it, which means another trip there next week. Oh well, at least it isn't too far from our house.

On Watch Duty

Adrienne's wheezing and coughing have gotten worse the last few days. Today she saw the doctor and had a chest xray. Turns out she either has pneumonia or a partially collapsed lung behind the tumor. They can't tell exactly what is tumor and what is "infiltrate." She is slightly neutropenic and her counts are likely to go down the next few days, which puts her at more risk. She started a broad spectrum antibiotic (Levaquin) today and we're supposed to call at the slightest hint of fever or chills. She also lost a few pounds over the last week so I'm trying to make the foods she likes most.

Otherwise, things are quiet here. Curt went to see Daniel on Friday and his 9:45 pm flight home wound up taking off at 2:15 am (mechanical trouble) and he arrived home around 4 am so we had a lazy weekend.

Choices?

Last week, we asked the trial coordinator to find out if Adrienne can do some of the monitoring and treatment for the clinical trial at City of Hope when she goes back to school on September 1. The answer from the drug company was that she cannot. The trial will be opening at UCLA and she can transfer there, but it could be several months since they are in the early stages of setting up the site.

If the trial is working, obviously Adrienne has to stay on it but that would preclude her from going back to CMC. After some investigating, we think Adrienne might be able spend a semester at UNLV and then finish her last semester at CMC when the trial opens at UCLA but there's still some work to do to figure out how that might work. We've been hopeful that the trial is working since her symptoms had disappeared, but there is some new wheezing the last few days. For now, we're in a holding pattern until she has scans in a few weeks.

Adrienne generally feels better on this trial than when she's on chemo but still not 100%. She sleeps almost every afternoon and looks very tired much of the time with circles under her eyes. We asked that she get regular Aranesp and Neulasta shots but there seems to be an issue getting the insurance to approve it unless her counts are really low. I need to work on that this week because we don't want to wait until she's feeling really lousy to get the shots. It seems like it's always something.

Adrienne still has some pain in her foot and is walking with the boot. She had an MRI last week but no word yet. She also saw a neurologist to figure out the weakness in her leg. The doctor is pretty sure that it's a nerve problem due to radiation but she needs more tests to be sure and there may not be a way to fix this problem. Again, we'll know more about all of this in a few weeks.

A few people have asked about my shoulder. Yes, it's the right one. I also may have a pinched nerve in the elbow but I'm going to wait until the shoulder surgery is done to address that problem.

We've had a lot of visitors the last few weeks. As far as we know, no one else is coming to visit so we'll try to relax for the rest of the summer and take things a day at a time.

Back on Track

Adrienne started cycle 2 of the Vidaza/MGCD today and is feeling fine afterwards. After just three Neupogen shots last week, her white blood count was more than 19,000. I asked if there had been a mistake earlier in the week but, apparently, someone with healthy bone marrow will respond this way to the Neupogen shots. Yeah for Daniel's marrow, which is much healthier than Adrienne's ever was. Adrienne sees the neurologist tomorrow so hopefully we can start to get to the bottom of the weakness in her right thigh. The foot is healing slower than we hoped but she is getting around quite well in the boot.

I've been having trouble with my shoulder for some time and will have rotator cuff surgery in September. I wanted to wait until Adrienne goes back to school so I can get her settled in before I lose the use of my arm. I'll be glad when the rehab is done.

Day 1, Cycle 2 -- No Go

We arrived at the clinic bright and early today happy that the traffic wasn't bad. Adrienne had her labs drawn, saw the doc, looked at Friday's chest xray that shows possible slight improvement and no new disease!!!! (okay so we have low expectations), Adrienne's ready for chemo, and then ... the trial coordinator let us know that Adrienne's ANC was less than 1,000, too low for treatment. And now we don't even get a week off because Adrienne has to go in each day for GCSF shots. I could do it at home but we have to order injectables through a mail order company and couldn't get them for several days.

Overall, Adrienne is feeling very tired and her stomach still bothers her from to time but, as usual, she looks wonderful.

Curt's family is going back to Seattle tomorrow after a great visit. I think we'll be happy to skip the Strip for a little while, at least until Adrienne's aunt is here the weekend after next.

There's no place like home

We've been running here and there so much that it's especially nice to be home for the foreseeable future. We'll have some visitors over the next few weeks, which is fun, but I think we're all happy to be sleeping in our own beds. Curt's brother and sister are coming this weekend and my sister and her family are coming later this month.

Adrienne had labs today and her counts up are a bit so she doesn't need a transfusion. She's still really tired but things are moving in the right direction. She got a shot of Aranesp so hopefully that will help over the next few weeks. She'll get a chest xray on Friday just to make sure the tumor in her lung isn't getting out of control before starting the second cycle of the trial next week. She'll have scans in mid-August.

Joyce's funeral was nice. They put together a slide show from when she was a little girl until her death. She even wrote her own obituary and selected the flowers and music before she died. That's Joyce.

Insanity

Things have been a bit crazy around the our household. Early last Wednesday morning, Curt's brother called to say that their mom had passed away after a steep decline the last few weeks. The funeral is this Wednesday in Seattle and we'll be flying up there tomorrow. Curt is doing okay but, as expected, is quite upset. Men and women just deal with these things differently I suppose. When my dad died, I could barely contain the tears.

Last Wednesday afternoon, after the phone call about Curt's mom, Adrienne and I flew out to Boston for the Hodgeapolooza bash. About 30 of us (patients and family) from as far as Scotland and California gathered for fun and sightseeing. It was an amazing opportunity to meet up with our online friends from the Webmagic Lymphoma forum. Unfortunately, Adrienne started feeling bad the morning after we arrived with bad GI symptoms and painful stomach aches. She was up and down the entire time we were there, joining in on some activities and sleeping during others. Prior to the trip, she was feeling fine so we were caught a bit off guard with the sudden changes.

Today she had her checkup with the doctor and he prescribed some medications to help with the symptoms. The problems seem to occur the day after the MGCD so we'll try to get on top of it quicker this week. Add to that, Adrienne is severely anemic and can't get a shot of aranesp before we leave. Apparently, the insurance companies now won't approve the shot without a ferritin level and that takes 24 hours, just about the time we'll be on the plane to Seattle. I have a call into SCCA where Adrienne had her allo transplant in 2003 to see if she can get labs and possibly a transfusion while we're up there.

We'll be back on Thursday night and, hopefully, we'll have a quiet 4th of July weekend. I'm not planning on falling this year so we should be good to go. Hopefully Adrienne will be feeling well by then.

Jersey Boys

In case you haven't figured it out yet, we LOVE the theater. We're really spoiled here in Las Vegas now because there's always something going on. After last week's really long clinic week, we decided to catch Jersey Boys on Saturday night at the new Palazzo and we thoroughly enjoyed it. If you have an opportunity, I'd definitely put it on your "must see" list. Then on Sunday, we were shocked to hear about George Carlin's death. We just saw him a few weeks ago and he looked great. We feel lucky to have seen one of his last shows.

Adrienne is actually doing quite well on the trial. Besides what seems like quite a lot of fatigue, she's had few other side effects. The biggest issue we've heard about on the trial are GI side effects and she hasn't had a lot of those so far. Her foot is also healing nicely and she's walking with a boot and no crutches as of this morning.

My mother-in-law has amazed everyone with her ability to bounce back but things sound imminent now. Hopefully the next few days will be filled with peace.

"Buttermilk"

Adrienne got the first dose of Vidaza this morning. She has no nausea and feels okay but is very tired and sleeping as I write this. Today's visit was fairly long but hopefully the rest of the week will be quicker.

Last Saturday, Adrienne and I stopped at Whole Foods to get a bite to eat while running errands. We thought it definitely sounded healthier than the fast food alternatives along the way. Adrienne got an 8 oz container of Horizon Organic Milk. She thought the milk tasted slightly different than usual but assumed that it was because it was organic. Then she sipped some lumps through the straw. Yuck. The expiration date on the milk was Oct 13 2007. When we got home, I called the on call doc at Nevada Cancer Institute. It turns out that "old" milk is really just buttermilk and not full of bacteria as we might think. Adrienne felt fine the rest of the day but it was all still a very unpleasant incident. Today I wrote a letter to the national and regional offices complaining about their "quality assurance" procedures. It will be interesting to see their reply.

Clinical Trial Chronicles

Adrienne is getting her second test dose of the MGCD-0103 drug today. It'll be a long day since we had to wait for labs before starting, and then there are 8 hours of blood draws (called PKs). Thankfully, this the last LONG day. She felt a bit "off" the two evenings following last week's test dose but has been feeling fine since.

Adrienne is ready to toss the crutches in the garbage. Overall, her foot is feeling better but she's been told not to put any weight on it and swelling is still an issue. We got a wheelchair over the weekend so we could get out. We even made it to the mall on Sunday and saw George Carlin on Saturday night. I hate shopping but George Carlin was a lot of fun. The weather has been perfect, not too hot, so we've been spending a lot of time sitting around in the backyard. The dogs love to be outside with us.

My mother-in-law, Joyce, is hanging in there. Her pain is quite bad and she sleeps most of the time, but was able to talk to Curt on the phone on Sunday.

Silliness, by Adrienne

With all the falling from what we thought was neuropathy, it was bound to happen. Today I fell in the lobby of Nevada Cancer Institute while trying to catch the elevator, quite silly really. I broke my foot in at least two places, maybe three. It hurts ***A LOT***. I'm using a compression boot and crutches and will have it looked at again when the swelling goes down in about a week.

Mom and I also got ourselves into a panic about the size of the tumor in my lung (6+ cm) plus increasing wheezing and talked about going straight to chemo instead of the trial. We came to the conclusion that we have faith in MGCD and would like to give it a shot. According to the doctor, it's not less likely to work because of the amount of cancer I have. We'll just want to monitor more frequently.

We spent much of last week in Northern California. Mom had meetings for work and my aunt's 50th birthday party on Saturday was fun and chilly. On Friday, I saw the pediatric neurologist at Stanford to discuss the aforementioned neuropathy. Turns out it probably is not a result of the oxaliplatin/gemcitabine. He's not sure if it's muscle atrophy or nerve damage but we were able to pinpoint the problem to my right quadracep. I'll start with an MRI of my hips and pelvis and then will have other tests as necessary.

Scan Results

It's taken a few days to get Adrienne's scan results...new place, new nurses, no one wanted to give us information over the phone. After a few phone calls, I finally got a nurse to read the impressions to me and then fax the reports (one for the PET and one for the CT). It sounded worse over the phone than the actual report but it was still not what we wanted to hear. "Apparently the patient's right lung mass has increased in size and become confluent with right hilar adenopathy/disease" and "abnormal activity in the spleen is probably indicative of disease at this location" indicating "splenic involvement with metastases." (The spleen didn't show on the last PET scan.) There are some other non-specific (not large) nodes as well as something in the adrenal gland, which is presumed to be a (benign) adenoma but the radiologists weren't sure.

Adrienne is wheezing more but has no other symptoms. Even the itching is almost non-existent. She told me not to worry too much. Easier said than done. Thankfully, Adrienne starts the trial next week and we pray that her disease responds. We need some good news.

Schedule In Place

Adrienne saw the doctor today and getting into the trial turns out to be very easy. She'll have a PET scan tomorrow (Thursday) and CT the following day as the drug company wants both. Labs will be drawn tomorrow before the PET and that's it. We're going to be in the Bay Area next week so she'll start the MGCD-0103 on June 2 and the Vidaza on June 16. There will lots of clinic visits, exams, and blood draws in between but at least things are in motion. We should have scan results Friday or Tuesday but we aren't expecting significant progression based on her labs and symptoms. Keep your fingers and toes crossed please.

From Adrienne

I'm home from college and sleeping more than awake but this is a good thing because I'm catching up from the last few days of school. I'm losing weight from the cancer and you would think the process of gaining it would be fun but I feel like I'm force feeding myself. Mom is trying really hard to entice me with homecooked dinners and baked goods.

I'm seeing the doctor next Wednesday and hopefully I'll start the tests right away. I've always said that I've been really lucky in my treatment. Whenever I needed something, a new chemo, a new type of treatment, it has always been there and this trial might be another case. It's one of the few showing results in people like me and it just happens to be in Vegas where I had already decided to spend my summer.

My Grandma Joyce is in a lot of pain now and it doesn't look like there's much time left. We all hope that this won't last long and that she'll be at rest.

Good: Labs, Bad:Symptoms

Adrienne had a quick checkup and labs today. Amazingly, her labs look better than they have in a long time with HGB=12.2 and platelets=334. On the other hand, the itching is worse and the wheezing continues, not constantly, but it's still there. I asked Adrienne if she told the doctor about her symptoms, she did, and he said "oh sh-t" under his breath. You gotta love that doc.

The plan now is for Adrienne to finish exams next Wednesday and then I'll drive her back here to Las Vegas. She sees the doctor for the clinical trial on May 21 and we hope she can start within two weeks. Of course, she has to pass all of the qualification criteria but we're feeling pretty confident with her labs being so good. Hopefully her scans won't show significant progression of her disease.

Touch Wood

Wouldn't you know it? As soon as I write how well Adrienne is doing, some of her Hodgkin's symptoms have returned including the itching and wheezing. It isn't awful right now but definitely there. At least the cough has improved. She took the Atarax for the itching last night and slept past noon today. Usually it calms things down for a little while so we hope that's the case this time. In the meantime, she's keeping busy finishing off the semester and planning the summer.

After a few hiccups getting records to the Nevada Cancer Institute, they have almost everything they need. Luckily I had collected some recent records for MD Anderson so I was able to fax those over. They still need some information about the clinical trials Adrienne did in New York but we should be good to go for Adrienne's appointment on May 21. At a visit to NCI today with our friend Karen, I saw Dr. Dang and am really excited for him to take care of her and Karen. I was very impressed with how familiar he is with her case already and feel totally at ease with him. He has a wonderful bedside manner and is extremely knowledgeable about lymphoma. I wish I had known about him when my dad was sick as he specializes in the type of lymphoma he had (T cell lymphoma) and has saved many lives.

Still Holding

Curt and I had a great vacation in Key West and Miami. Everyone was fine while we were away, which was our biggest concern. We haven't had a vacation together in a long time so it was nice and relaxing to get away. We definitely liked Key West the best and will return sometime in the future, hopefully with Adrienne and Daniel.

Adrienne is in the throws of the last weeks of school, which is always tough. I remember well the rollercoaster of college. She is holding up as well as can be expected and will register for next fall's classes this week too. She already chose her dorm for next year, which is in a new building on campus with individual AC and heating control. Nice!

Adrienne has had a sinus infection and cough, which is a bit concerning. She's on her second course of antibiotics and she isn't sure if things are improving or not. Thankfully, she hasn't had any fevers but tumor is always a concern when there's a cough that doesn't respond to antibiotics. She's also itching a bit again after a few weeks reprieve. I still don't have word on the clinical trial so I'll be on the phone this week trying to get a tentative schedule.

It's all good

Adrienne is doing great. She's really happy at school and looking forward to next year and graduate school (yes, that's Adrienne, always planning ahead). She sees the doctor tomorrow for labs and a checkup but we don't expect any surprises. And, it turns out that the trial we're interested in opened last Friday at the Nevada Cancer Institute. They're busy getting her medical records and she should be able to start almost as soon as school is out. Yippee. In the meantime, the career center at CMC has sent a letter to the career center at UNLV asking that Adrienne be allowed to use their services to find a summer internship.

Our visit to Seattle last weekend was good, though a bit bittersweet. Joyce is doing relatively well and we're glad we were able to see her while she's still having good days. If she's still feeling well, we'll go up there again in May after our vacation. Oops, forgot to mention that Curt and I are going to the Florida Keys and Miami on April 16 for a much needed break. I'm already packing.

Balancing Act

Adrienne is feeling really good right now, better than she has in months. As has been the case for the last few years, we need to balance her life and how she feels with these treatments and clinical trials. In many ways, we're very lucky that she has a relatively slow growing cancer and that we have the luxury of time to figure out the next best steps and to try more than one drug. When she's highly symptomatic, as she was last fall, we feel the need to get something going as quickly as we can while trying not to do too much damage, since an infection or bone marrow damage could be catastrophic to her.

Given this window we have in her health and a wide open summer, I've been researching a number of options including contacting MD Anderson. After a week and a half of talking with staff and obtaining records, Dr. Younes, their Hodgkin's researcher, called and we talked for about an hour. We went through all the options at City of Hope plus the options available at MD Anderson. He was honest in saying that there's no right answer and no one knows what will work for Adrienne. The trials at City of Hope seem very promising in the lab, and the best news is, the drug that's only been available at MD Anderson may be coming to the Nevada Cancer Center soon, so of course, I have a call in to them too.

It seems that my asking for records and letting COH know that we're looking at other options got them busy and the AKT trial is now approved. Tentatively, Adrienne will start next week. In the meantime, we're off to Seattle to see Joyce. She's feeling relatively well and looking forward to our visit, along with a potluck lunch at the house with the whole family, millions of cousins and all, which I'm sure will be bittersweet.

Holding Steady...I Think

Elton John was amazing!!! We had so much fun and each song brought back its own memory, at least for Curt and me. Visually, the show was great too with videos in the background and some enormous and amazing balloons on stage (I guess you had to be there).

Adrienne returned to school on Sunday and is back to being busy. She fell again on Sunday night so we've arranged for some physical therapy to help her build some strength and hopefully avoid future falls. Otherwise, she's feeling well and less fatigued than in a long time.

Curt's mom had scans recently and the doctor thinks she only has a few "good" weeks left, whatever that means, so we're going to fly up to Seattle next week to see her while she's feeling well enough. Adrienne is going to fly up and meet us too since she only has classes Monday though Wednesday. Unfortunately, Daniel won't be able to make it but we'll send his best wishes. Many of us have been there, losing a parent, but it never gets easier. At this point, we just hope she isn't in too much pain.

Not Much New

Adrienne has had a relaxing week off of school. She's been doing a bit of homework, researching graduate schools, looking into summer internships, and most importantly, sleeping late and eating some of the baked goods I made. After last summer's internship working for a hedge fund, she's realized that business school isn't her cup of tea and she isn't as ambitious or aggressive as people in that world. Instead, she's looking at getting her doctorate in clinical psychology. We all like the idea of calling her Dr. and think it's a great way for her to go. Meanwhile, she's looking for a summer internship (preferably paid but volunteer would be okay too) in clinical work.

Tomorrow night is the Elton John concert and we're all really excited. Curt saw him in 1973 when Yellow Brick Road came out and it was one of the first LPs I ever got. It makes us feel really old but we're still excited. He's only here a few weeks each year and, because it's Good Friday, we were able to get great seats at a great price. (We're Jewish so it's okay.) Have a Happy Easter everyone.

Home

Adrienne arrived earlier today and is taking her nap now. Boy, that girl can sleep, even on an airplane. She's very thin but otherwise looks well. She had another fall a few days ago and her knee is a bit swollen and scuffed but hopefully it isn't serious. She's also itching again. The itching doesn't indicate how much disease she has but it's usually a sign that something is growing. We were just hoping for a little break. But leave it to Adrienne, she's looking at graduate schools now. Stay tuned. Our big event during her visit is seeing Elton John on March 21. I can't wait.

My mother in law had another fall last Friday, breaking her hip and shoulder. She's home now with Curt's brother taking care of her, but obviously, we're all very concerned. The cancer isn't bothering her so much but she's in a lot of pain from the breaks so we're still taking things a day at a time. My mother's husband also had heart surgery a few weeks ago and has had a tough recovery. It's so hard when your parents get old, you know it's going to happen, but still it's tough.

Quick Check

Adrienne went in today for labs and a PFT. For some reason, the doctor ordered only part of the PFT so she'll probably need to go again (ugh). Her blood counts were great, almost back to normal and her Hodgkin's symptoms (itching, wheezing) are non-existent so it's all good. She even drove herself today. Now she just needs to gain back some weight. We'll be working on that when she comes home next week.

For some time, I've been keeping in touch with Jennifer Willey, a young woman from Maine, who had an allo transplant over a year ago for Hodgkin's. Jennifer is fighting very serious graft-vs-host disease. Her spirit and will to live is amazing while she faces unbelievable obstacles. Please go to her website and leave her a note: http://www.freewebs.com/jenniferwilley/. I don't think I've made a secret of it but I don't believe that allo transplants for Hodgkin's are wise. Given the risks (high) and chances of success (low), we would not choose to do it given the options available today.

Waiting for Clinical Trial

We're in a holding pattern now waiting for the AKT inhibitor clinical trial to come online. Apparently, just one more approval is needed from City of Hope's internal review board, which meets on March 11. Adrienne is off school the week of March 17 and would like to start the trial the following week. As usual for a trial, she'll need scans, blood work, and a bone marrow biopsy...her poor backside. I can't even count how many of these she's had over the years.

Adrienne is really enjoying her classes this semester even though she's a bit overwhelmed right now with midterms and papers. She is still absolutely committed to graduating with her class in May, 2009. Unfortunately, she had a few more falls this week and has been extremely fatigued so driving is out again for the time being. The neuropathy resolves for most people within four to six months but, obviously, we hope it doesn't last that long. Thankfully, she isn't having any pain right now and she hasn't hurt anything seriously with the falls.

Next Steps

I went to California yesterday to go to the doctor with Adrienne to discuss next steps. She looked really gray early in the morning but perked up as the day went on and she ate a couple of good meals. Her blood counts were pretty good, not perfect, but much improved and she is regaining some strength. Hopefully things will go back to normal over the next few weeks as her body recovers from the chemo. As soon as the AKT inhibitor trial is ready, she will start that. It is just waiting for review board approval so it will be available when Adrienne is ready to start in about five weeks. If she responds to that, great. If not, she'll go on another trial with a drug called LBH569 (an HDAC inhibitor) combined with an mTOR inhibitor. We expressed our concern about doing a trial in its very early days but her doctor wants to start her on the lowest dose since she's had so much prior treatment. There's no question that she's much more apt to get side effects and we don't want to do anything to further injure her bone marrow, as that would be catastrophic. Adrienne will get a quick checkup in two weeks and then will have three weeks off from doctors. YYYEEEAAAHHH!

I signed up to donate blood yesterday. I've never been able to give before because I was severely anemic but a hysterectomy solved that problem. I showed up yesterday, filled out multiple forms, got a a satisfactory check by the nurse, and was ready to go. The nurse checked my left arm: no good veins. Then she checked by right arm: one vein looked good, a little questionable, but we hoped it would work. The needle they use is HUGE and the vein blew as soon as inserted the needle. First, the blood welled up under the skin and before she could catch it, it was splurting all over the place. Needless to say, they don't want me as a donor and I have a big, colorful bruise all around the area. Hopefully I'll get to help in another way with a bone marrow donation but my days as a blood donor came and went before I knew it. (Okay, it wasn't too much fun at the time but I can laugh about it this morning even though I'm disappointed.)

Stopping Chemo...For Now

We had a long talk this afternoon and agreed that Adrienne has to go off this chemo. The neuropathy is getting worse and she doesn't trust herself to even walk around campus. She fell again on Saturday night and has new weakness in her right hand. This is a tough decision but we feel it's for the best right now, especially given the recent scans. The plan now is for her to recover and regain her strength and hopefully start another clinical trial in a few weeks.

Neuropathy

While Adrienne didn't have any falls this week because she's been extremely careful, she has profound weakness especially with the right leg. She drove herself to City of Hope today but has decided that she is giving up driving for the time being, as she just doesn't trust her strength. Her doctor wasn't there today so she saw another doctor who gave her a neuro exam and Adrienne didn't get any specific feedback except to say that yeah, she's weak (duh!). We'll hear next week whether or not she can stay on this chemo given the extent of her neuropathy. Blood counts weren't too bad today with platelets down but acceptable. She got a shot of neupogen to stimulate white blood cells and aranesp to stimulate red blood cells/hemoglobin. Hopefully her energy will pick up.

I myself made an appointment at City of Hope next Friday to donate blood. I wasn't able to give in the past due to my own anemia but since my hysterectomy in 2006, I'm hopeful that my hemoglobin is high enough now to be able to help. They told me to take iron between now and then just to be sure. So here's my little plug for blood, platelet, and bone marrow donation. If you can do it, donate blood and ask to be added (for free) to the bone marrow registry.

Not much going on this weekend. Some good friends of ours from the Bay Area will be in Claremont this weekend showing their son colleges and Adrienne is looking foward to their visit. She has two papers and an exam due next week and we're just pooped here in Nevada, looking forward to a few days off. Enjoy your holiday weekend.

Title?

I always try to come up with a catchy title for this blog but I'm not too feeling creative right now. Today I have nothing inspiring or witty to say and I don't quite know how to describe the current situation.

Adrienne had a PET/CT on Thursday as we wanted to see how she's responding to the chemo before continuing. Obviously, we don't want her to have all the side effects that go with chemo unless she's getting a benefit. We hoped and expected that her disease was responding well. What we got was a mixed picture that no one could figure it out. On Friday, she had a CT with contrast to get more information. Here's what we know: the tumor in her spleen is virtually gone, the tumor in her lung has shrunk about 30%, and there's some new activity in the hilum (near the lung) and in the subcarinal area (near the esophagus). Both of these are quite small (under 2 cm). There's also some diffuse activity in the mediastinum that apparently has been there but we didn't know about it.

So what do we do? It's a judgement call at this point. There aren't any trials open right now (though something is coming soon) and Adrienne has had all the other chemos out there. Her onc talked to the head of the lymphoma service and we all agreed to continue with this chemo for a few more cycles. Her big tumors have responded so we know it's doing something. After nearly two days of questions, she had chemo at a reduced dose yesterday. We added another antiemetic (Emend) and hope that helps control her nausea better. Hopefully the other side effects, especially the neuropathy and low platelets, are better this time. She's going to see the doctor once a week and we'll just watch things closely.

I keep expecting things to get easier or to get a little break, but it's just not to be.

Another Loss

We lost another friend this week, Sarah Hawthorne. She was an amazing person who offered her wisdom and support to many, many people on the Webmagic Hodgkin's forum. Similar to Adrienne, Sarah relapsed after an autologous transplant and recently started a phase 1 clinical trial. She died shortly after that, stunning all of us who knew her. As Brian said, "We all tend to settle down into our specific roles here on the board - the joker, the healer, the parent, the hero, the fighter, the librarian, the cheerleader - Sarah was one of the few who filled all of the roles. As sad as I am for myself, for those who've known her from the start, and those who had barely met her, I feel most sad for those who will come after and not get to know the light, happiness and love that is Sarah."

Adrienne's platelets came up a bit on Wednesday so she was able to skip the transfusion. She still has some hideous looking bruises on her foot and butt from her falls but at least they aren't hurting so much any more. Since her chemo was cancelled this week, she came home yesterday and will go back to California on Sunday. She is very fatigued and pale, but otherwise is feeling well. She has scans next week and if her disease is stable or smaller, she'll get a reduced dose of the same chemo. If there's been any progression, she'll start another phase 1 clinical trial. Scary times right now...

Now Platelets

TUESDAY UPDATE: Adrienne definitely is not having chemo this week. She'll see her doctor on Wednesday afternoon and then she'll get more platelets. Scans will take place next week to see if the chemo is working. Assuming it's working, she'll begin a new lower dose than she's been getting.

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While Adrienne's falling/neuropathy appears to be resolving, now she's needing platelets every few days. She got them on Friday and Sunday and we're just hoping they hold out until Thursday when she has no classes again. Even though the platelet transfusion only takes 15 minutes, the whole event takes about 5 hours, from getting blood drawn, receiving results, ordering the platelets, and getting them transfused. Between the falling and low platelets, she's bruised from the waist on down and even has bruises on her foot from wearing flip flops so she's taking plenty of Tylenol.

Needless to say, she probably won't be having chemo this week. Platelets are the last blood cell line (after white cells and red cells) to recover and she's had relatively low platelets for a few months now. The doctor suggested scans earlier to see if the chemo is working and then cutting the dose, which Adrienne is willing to try.

Adrienne's biggest problem right now is getting her frig and microwave, which are in storage. The guy with the key is in New York but he'll be back in Claremont this week. She needs those things so she can prepare food in her dorm, especially when she's tired or not feeling well. With everything else going on, she's still finding time to be quite the social butterfly, catching up with friends who studied off campus last semester as she did.

Falling...Now What?

Since Tuesday, Adrienne has fallen twice leaving her somewhat bruised and sore. The culprit is peripheral neuropathy from the oxaliplatin. It seems to have started very early, probably due to Adrienne's prior treatment with vinblastine, vincristine, and vinorelbine, all of which cause peripheral neuropathy. In 2003, after her allo transplant, she was barely able to walk and had numerous falls so this is particularly concerning. I called the drug company yesterday and their studies only include people newly diagnosed and, in fact, the person I spoke with said she'd never heard of anyone who had had so much treatment. The long and short of it is that peripheral neuropathy can be debilitating and lasts up to two years in about half the people. Needless to say, it seems unlikely that she'll be able to stay on the oxaliplatin, so there may be no treatment for awhile until another clinical trial is available. We just hope we got enough of the Hodgkin's to give her some breathing room.

In other news, Adrienne's class schedule is set. The best part is she only has classes Monday, Tuesday, and Wednesday, so hopefully her stress level will be minimal and she'll have some free time. She's taking Intro to Media Studies, Leadership in Management, Forensic Psychology, and Ethics in Management. I wish I could go back to college.

Tough Side Effects

Thank you so much to everyone who leaves comments. Adrienne reads them all the time and also makes sure that I what I write here is correct. She's back at college now and classes start on Tuesday so I'm sure life will be hectic before you know it. She isn't going to work this semester so hopefully that will alleviate some of her stress.

The oxaliplatin causes a type of acute neuropathy, specifically extreme sensitivity to cold. Yesterday and today, Adrienne had something called pharyngolaryngeal dysesthesia, which makes it feel like your throat is closing and you can't get air, scary to say the least. After lots of discussion with the doctor, we now know that this is a sensation and it doesn't actually result in a lack of oxygen. Adrienne is going to start taking calcium and magnesium in an effort to stop this side effect. Her nausea has also been bad so we're going to add another antiemetic for the next treatment. After that, she'll have scans so we can see if she's responding. Adrienne says it will be worth the side effects if it's working. The wheezing has stopped so we're hoping that's a good sign.

Adrienne goes in Friday for labs. This is supposed to be a quick visit but she may need platelets or red blood cells so she's prepared to spend the day at City of Hope if necessary. I'll be going to back to take her for the next chemo in two weeks.

Chemo Today

Adrienne's platelets were 69 yesterday, just high enough to get chemo. All of her other counts were good. Most places require that the platelets be over 100 but her doctor said they would do it at 50. I always wondered why they just don't transfuse if platelets are low but I've since learned that low platelets are the first sign of bone marrow damage and they don't want to give chemo unless the marrow is healthy.

Needless to say, Adrienne isn't looking forward to any more chemo. She asks why she has to do this when others her age don't. There's no answer to that so all we can do is be there for her and encourage her. This gets tougher all the time, and no, it isn't fair.

Religion and Politics

These are two subjects I usually don't discuss because inevitably they result in arguments but this presidential election has my curiousity peaked. Politically, I would say I'm very moderate: fiscally conservative, socially liberal. Unfortunately, sometimes those views are at odds with each other. When we moved to Nevada last year, I registered as an independent voter because, frankly, I'm pretty disgusted with both parties. In California, that means you can't vote in the primary elections but I found out that that Nevada has a caucus where you just show up to vote, pretty cool.

The California primary was always in June so our votes didn't mean much. Plus, the candidate who won that state has always been known for a long time so they didn't visit California a lot despite its large electorate. This year, the presidential candidates are very interested in our little state because of the early caucus. Last night, we had the opportunity to see Barack Obama. We've never been to a campaign event like this and thought it would be interesting and we were not disappointed. Standing in line and waiting for 3 hours wasn't a lot of fun but being there and experiencing our system in action was exciting. I am still undecided in this race but I hope to attend more events like this with other candidates.

Adrienne is feeling good the last few days and is eating better. She was quite weak earlier in the week but her strength is returning. She had labs drawn yesterday and her platelets are quite low, 50,000. The doctor said he hasn't seen platelets that low with this protocol and is concerned that her bone marrow is "tenuous" given her prior treatments. She is supposed to get chemo on Friday but I think we'll check the platelets again here before going to California to make sure she can get her treatment.

Chemo Approved

We just got confirmation that the insurance company authorized Adrienne's chemo. At least that's one less thing to worry about. Adrienne has been very tired and her stomach pain started again today, but otherwise she feels well and is eating.

Chemo #2

Actually, I don't know how many chemo treatments Adrienne has had in the last 11 years but yesterday she got the second dose of the gemcitabine/oxaliplatin treatment. Early in the day, I was asked to meet with someone in patient financial services. It turns out that the insurance denied the oxaliplatin as nonstandard for Hodgkin's Lymphoma. After lots of phone calls and a quick appeal, it appears that this has been resolved. In the meantime, I signed an IOU saying we would pay if the insurance wouldn't to the tune of $16,000 per treatment. We'll be a bit nervous until we get something in writing from the insurance company but I feel relatively confident that this will be paid. Adrienne's doctor said he almost had the insurance company doctor in tears about her options, plus he provided studies describing the effectiveness of this drug in lymphoma, which they requested. We've had to appeal a few things in the past but nothing this large.

Adrienne has not been feeling well at all since the infusion. We drove from City of Hope back to Nevada last night and she slept most of the time. She was having fevers from the gemcitabine last night but that seems better this morning and she ate a bit of breakfast. Prior to the treatment, she said she was feeling better than she had in months so we hope that this is a good omen that the treatment is working.