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.