Saturday, May 29, 2010

My mixed bag of results

On Wed (5/26) I had CT scans and saw my home oncologist for the first time since my IL-2 experience.  I'd had scans in February that showed everything stable after two rounds of two weeks of IL-2, so I was on 'reprieve' for 3 months.

The areas of concern are my liver, where several mets were seen, and my right ovary, by/on which a mass appeared last summer.  At that time my oncologist (Brian Rini at Cleveland Clinic) felt that the ovarian lesion was not RCC so he consulted with my GYN. They decided to treat it as if it were RCC; nobody was in favor of biopsying it at that time.  I decided to try IL-2, which as of now has brought me stability.

The current scans showed good news on the liver mets; according to Dr. Rini they were the same or maybe a bit smaller than they were last summer.  The ovarian mass is, however, larger.  He still thinks that while it is certainly possible that it is RCC, that it also could be something else.  He didn't have copies of the films from the MRIs I'd had in February, since they were done at OSU Medical Center, and wants to get those to compare.

So, for right now Dr. Rini's plan is 3-fold:  1) he will consult with my IL-2 oncologist, Dr. Olencki at OSU to get his impression of the ovarian mass as of February, 2) he is requesting a copy of the Feb scans for him to review, and 3) he will consult with my GYN to see how she wants to proceed.

At the appointment I was at first disappointed, then started to feel pretty upset and scared.  Of course, my mind went to 'bad places' about the ovarian mass.  A night of sleep helped me to put things in perspective though.  The liver results are Good News.  So I am celebrating that.  If the ovarian mass is found to be RCC, then we're just on to the next step in treatment.  If it is not RCC, hopefully whatever it is, can be removed, and whatever treatment I might need, I can handle... I've handled everything so far just fine, relatively
speaking.  :-)

With the holiday weekend here in the US upon us, I don't expect to know much more until the middle of next week, and so I choose to put it into the back of my mind so I can enjoy my 3-day weekend.  I will update again when I do know more.

Friday, May 28, 2010

Au revoir adenoids

We finally got to the day of Rebecca’s adenoid surgery, after two reschedules. She was pretty calm, after having been really afraid for the last few weeks. A couple of talks with her school guidance counselor really helped her out; I am so grateful to the counselor for taking the time to work with her.

We had to report to the surgery center at 11:00 am, with the surgery being scheduled for just after noon. This wasn’t great news for our poor hungry girl, since she wasn’t allowed to eat after midnight. We agreed that I would wake her at about 11pm for a snack, but when I tried to rouse her, she was too deeply asleep. At the surgery center, Rebecca put on a cute gown and pants, put her hair in a cap, and hospital ‘grippy-bottom” socks on. She was delighted by those socks; she kept commenting about how they felt “funny” to walk on. Then we waited… as is normal, things were running a bit behind. At one point the anesthesiologist came in to see her. He showed her a face mask and IV gear and asked her which she would like for her surgery. Surprisingly to him and most of the other staff, Rebecca chose to have an IV in her hand. She didn’t like the plastic smell of the mask, which I can totally understand. The anesthesiologist gave her an injection of lidocaine, then put the IV line in, which fascinated Rebecca once she got used to it.

Finally at about 1PM they were ready to take her to the OR. One of us parents was allowed to go into the OR with Rebecca, to be with her until she fell asleep. I had asked her which of us she wanted to come. She said she couldn’t decide, so she wanted Jim and me to decide. Of course we couldn’t pick either, so we ended up using the old rock-paper-scissors method, with Rebecca playing for Jim. Jim won, so he donned a gown and a hair cap and went with her. When he came back to the waiting room, he told me that she wouldn’t count backwards out loud; instead was counting in her head! Despite her fears, she fell asleep quickly and easily.

Jim and I popped down to the mini-cafeteria in the building for some lunch. We got back upstairs at about 1:30 and literally had just settled into seats to read the paper when the surgeon came to get us. The whole procedure only took about a half hour! The surgeon told us that everything went well, gave us some instructions for Rebecca’s after-care, and took us back to the PACU to see her.

Our poor girl looked just miserable. She was lying on her side in bed, with a bit of blood trickling out of her nose, while a nurse talked closely and gently to her. When we arrived, Rebecca was still feeling dizzy from the anesthesia, and was very disturbed about the blood oozing from her nostrils – it was not a lot of blood and we’d been told to expect it, but she was shocked and unhappy. She told the nurse that she hurt, and the nurse brought over the pain scale to have Rebecca rate her pain level. She pointed to the face that corresponded to a 6 on the 1 to 10 scale, so after consulting with one of the MDs in the room, they put some medication into her IV. She continued to hurt, so they then gave her a dose of oral medication. That seemed to bring her medication up to a therapeutic level. When the nurse asked her a bit later if she felt better, Rebecca said “a little bit”. On the pain scale, she pointed to the face that corresponds to a 2, which made both the nurse and me chuckle. Once the dizziness wore off, Rebecca was hungry and thirsty, so the nurse brought her apple juice, cookies and graham crackers. Rebecca continued to be upset about the blood coming from her nose, using a tissue constantly to blot it away. They tried a couple of times to tape some gauze like a sling under her nostrils, but she didn’t like how that felt. In general though, she perked up before our eyes and was ready to head home. Her nurse told her and us that Rebecca was the best patient in the surgery center that day, child or adult – everyone was really impressed by how brave and cooperative she was. Jim and I were very proud of her. We would have understood completely had she complained or cried, but she kept herself together really nicely.

At home she continued to keep a box of tissues with her, along with an emesis bucket they’d sent home with her to keep her bloody tissues in. She had been advised to eat what she wanted and felt she could eat, but to avoid things that could scratch her throat at first. I made her some macaroni and cheese, which was a big hit. I went to pick Carly up from day care and reminded her that she needed to be gentle with her sister, to not jump on her, or otherwise bother her as she recovered. The nurses at the surgery center had said that Rebecca deserved a nice gift for being such a good patient, so I had suggested that we could go to pick out a Build-a-Bear at the one store somewhat near us. Rebecca readily agreed – in fact, I think knowing that she was going to get a BAB perked her up more quickly. In the interest of sibling parity, I told Carly that if she could be gentle with Rebecca, that she too could have a BAB. This was a good enough bribe for Carly to be quite solicitous with her sister.

The next day, Carly went to day care as usual so that Rebecca could rest in a more peaceful environment. She was ready for action, though… already feeling much better. We gave her a dose of pain medication at bedtime the night before, and that ended up being the only dose she needed. Surprisingly, she didn’t bleed at all that night; she just had clear discharge from her nose, creating a trail of “crust” on her face. That crust alarmed her at first; she came into our bedroom in the middle of the night complaining that something was wrong, but was easily calmed down once I cleaned her up with a wet washcloth. Right away on Thursday morning she wanted to know when we were going to BAB; could we go tonight? I told her we should at least wait until Friday. She did however talk Jim and me into taking her to lunch at Cici’s Pizza; we then browsed Half Price Books, where she picked out a book for herself and one for Carly.

On Friday Carly stayed home and we all slept in. That afternoon the four of us stopped by Jim’s parents’ house so he could help his mom with a quick task. His dad had knee surgery the same day that Rebecca had her nasal surgery, and while Dad was also doing fantastically well, he was not able to help out. We had a nice visit with them, then headed for the one shopping mall in our area where they have a Build A Bear “workshop”. The girls loved it; both had to really ponder their choices befor deciding on animals. Rebecca chose an owl which she named “Snowy”; Carly picked a panda who was christened “Kayla”. Of course we had to pick out an outfit for each, including shoes, but were able to escape without additional accessories. BABW has a new animal, a tropical Hello Kitty. I have always had a soft spot for HK and might have given in to that spot to get myself a stuffed one… but they were tan in color, I guess as part of the “tropical” theme. I guess I am a HK purist because I didn’t really like the tropical kitty enough to get it.

We had supper at the food court while we were there, just sandwiches from Subway but the girls were entranced by the food court. It is an attractive space, much better than the food court at the mall by our house. As we headed home it looked stormy but we arrived safely. The rest of the weekend was pretty routine; Rebecca’s need for tissues diminished by the day. Her worst annoyance at that point was the antibiotic she had to take to ward off infection; she is so ready to start taking pills instead of liquid medications. She returned to school on Monday and feels great. She’s still a bit stuffy in the nose but I think that as she continues to heal, she will notice a big difference. She is so glad the whole episode is behind her, and so are her dad and I.

Sunday, May 02, 2010

How much am I worth?

Oh wow…  Thanks to my Kidney-Onc friends for alerting me to this story and providing this link.  Last week CNN aired a story called  'the high cost of dying' featuring the story of a man who had kidney cancer.  The story made some good points, but made more points that gave me a headache.  Watch it and see if you agree with my thoughts.

Before you even watch the story, read the summary below the video clip.  The woman did NOT spend $618,000 on her husband's cancer treatment.  That is the total of what was CHARGED to their insurance.  And that doesn't mean that was even what the insurance paid... if you have ever studied an explanation of benefits form from insurance, you can see that there is the 'retail' charge for a service, then the rate that is negotiated by your insurance company.  Many times it is much lower.  That is the amount your co-insurance is based on.  Of course, if you have no insurance at all, you are being charged 'retail'; you'll either never pay it off, will go bankrupt trying, or you won't go for treatment at all because you can't afford it.

Drug costs:  drugs are Very Expensive... we are all aware of that already.  Especially new drugs.  All kidney cancer drugs are new drugs, except for IL-2.  And again, the prices quoted in the story are noted as what was 'charged', not as what anyone paid for them.  It's mind boggling what drugs can cost, but slanted reporting to inflate the costs by the use of the charged amounts in the story.

The wife states at one point that the money spent on her husband's last hospitalization was to 'confirm that he was dying'.  What is she trying to say?  Were they forced to put him in the hospital?  Was he not there to hopefully feel better, even if only for a while?  It sounds as though that hospitalization came in his final stage; if they really thought it wasn't going to benefit him, perhaps they could have opted for in-home hospice treatment or no treatment at all.  Or is she upset because they expected the hospital treatment to extend his life?  If it had, would she now be talking about how expensive it was?  With terminal illnesses, hindsight is 20/20.  At the time a family is facing and making treatment decisions, they don’t have the luxury of foresight to say, well, this isn’t going to help the patient, so it’s not worth the expense, much less any pain or discomfort the patient may have to endure.  The family makes the decisions they think best at that time.

The reporter asks if the husband would have wanted to be 'saved at any cost'.  What kind of question is that?  If a person thinks that a treatment has the possibility to either cure them, or to extend their life with some quality of life intact, how often is that person going to say "oh never mind, this treatment is too expensive.  I'll just lay down here and die.  It's been nice knowing you all."  I am very aware that in the future Jim and I may have to face some high costs, depending how things go with my disease.  So far we have been very lucky and I feel very grateful for having excellent insurance; I get very nervous about the thought of being without that insurance.  But it would take a lot for me to give up on my life just because of the cost of treatment.  I realize that because I have insurance, and good insurance at that, that thought is a luxury some other people don't have.  And that makes me really sad.  

Then, after the wife says that her husband would have been appalled at the total cost of his treatments, she notes that their total out-of-pocket was about $10,000 and that she'd do it again in a heartbeat.  So now they've acknowledged that the patient's family didn't spend over $600K.  And, after making all the earlier shocked comments about costs, she basically says that she wouldn’t have done anything differently.

The last comments of the reporter, as well as the title of the report, bothered me a lot.  "Did all those expensive treatments actually help her husband live longer? Not even his doctors can say for sure."  No, they can't say *for sure* but they thought that they might, right?  Otherwise they wouldn't have offered them as options.  Despite what some cynics believe, I don't think that most doctors are in the business of giving people lots of useless treatments, just to run up a high bill.  Is there inflation of services in the medical business at times?  Absolutely.  But the tone of this final comment, along with the title "the high cost of dying", makes me think that the complaints about the costs are because the patient did after all die in the end.  Had he lived and gone on to do great things, or even live a productive life, would this story have aired?  

So there is the point, after all... should we as a society spend so much money on medical treatments for people who are just going to die anyhow?

Well, there's the thing... who knows if the patient is going to die anyhow?  Take a look at this patient.  He was free of visible cancer for two years after his nephrectomy.  Then he had IL-2 treatments, and went 3 more years before needing more treatment.  So there are three years he could spend with his family and friends that he might not have otherwise had.  He was gracious enough to participate in a clinical trial, which he likely hoped would benefit him.  Without these treatments, when would he have died?  Nobody can say, just as nobody can say that the treatments were useless because he died anyhow.  I know a number of people (some reading this right now!) who have battled stage IV kidney cancer for years, if not decades.  They have been through a myriad of treatments and drugs, some of which worked well, and others which failed miserably, along with various results in between.  Not only are these people still alive, they are LIVING lives of quality.  They are also sharing their information with others who are newer to the journey, to give us perspective and hope.  They are my inspiration as I plan to be another person who holds on for more and better treatments, in the hope of a cure one day, and if not a cure, then the ability to keep my disease at bay so that I can continue to live my life.

The cost of health care in the US is an enormous and enormously fraught topic right now.  I totally agree that costs need to be contained somehow.  But I also fear that people like me will not get the option to fight to live our lives if decisions are not made carefully.  When I read or hear the thoughts of someone who has insurance and has never had to deal with a serious illness, I understand a little bit why they feel like they don't want to have to pay for everyone else.  It's easier to feel like others have bad luck and will just have to 'suck it up' when you've never had to face it yourself.  It's true that a lot of our circumstances are out of our control.   But having the choice to have medical treatment shouldn't be. 

If you want to see another story with a slanted comment, watch this clip from CBS news.   The story itself is intriguing; it discusses the use of a vaccine to treat prostate cancer.  The statistics they report on survival of people on the study don't sound great, but they are likely to be better in real use when they are not just being used on people in clinical trials, who tend to be those for whom nothing else has worked.  In the kidney cancer world, the first statistics on the newer drugs didn't impress me.  I remember the first time I attended a kidney cancer patient meeting, at which Dr. Rini happened to be speaking - this was before I was his patient.  The progression-free and survival times for the patients in the studies didn't sound very long.  It wasn't until later, when I met people who have had true success, that I understood that the patients in the trials were much worse off than people taking the drugs once they were approved. Listen to the comments by Katie Couric at the end of the piece.  Thank goodness the reporter explains what I have above.  I wouldn't disagree out-of-hand that tens of thousands of dollars is a lot of money to spend for a small increase in a lifespan.  But again, they are looking at this with the benefit of hindsight... and since these are experimental trials, nobody knew what might happen.  But do most people watching and reading these news stories understand that?  Probably not.