Monday, April 27, 2009

Happy days are here again

My week of medical appointments is over now; I had something going on 5 days out of 7.

On Saturday I finally had my "annual" mammogram; it was originally supposed to be in early March but it was scheduled for right after my incision opened so I rescheduled it. It was fine, as it always is... not a fun thing to do on a Saturday morning but I don't find it painful either. Luckily I got results back a couple of days later, and they were normal. The tech was cracking me up though. She was from another location, subbing at my location for the day. My location is one of the few in the system that doesn't use digital films yet, and she was having to adjust back to that. Now I understand why it's easier to get an appointment there! I wondered aloud to Jim later as to why they haven't upgraded the machinery there. He pointed out that they've had several floods in their building over the past few years; radiology is in the basement of the building and gets completely trashed each time. Trashed like they have to close for a few weeks. So I guess I can stick with them and old technology or go to another location for digital. Not really a super big concern for me right now, though.

Monday was CT scan day; I also had bloodwork drawn, both for my kidney and also a Vitamin D retest. I was diagnosed as having a low level of D back in January and have been on supplements. The techs didn't do too badly with my shy veins; two pokes at the lab and three at CT. And almost no bruising after the fact; not sure how I got away that cleanly.

On Tuesday I saw the psychiatrist that does my medication management. We talked about how to talk to the girls if/when my health situation were to become more serious or grim. She shared an interesting caterpillar story as an analogy for dying and death. Weirdly, at home that night, Rebecca started talking about caterpillars and their live cycle, as they are studying them in science. I talked a little bit with her about it but decided not to press the analogy part of it. As for my meds, we're going to try increasing my dose of the med I take for ADD because I haven't been feeling like it's helping, especially at work. Well, it's helping some, because I don't space out and avoid work like I used to want to, but I still have a hard time focusing on one thing at a time. It's really difficult for me to know, though, how much of that lack of focus is me, and how much it is the nature of my job. Our area has gone through some restructuring recently, and I am hoping that as a result, I can focus more deeply on fewer project areas than I have been working on in the past. There is a lot to learn but it's impossible to get into anything in any depth when I have 100 other fires coming at me at any given time.

On Tuesday evening my primary care provider's office called. The Vitamin D results were in and my level increased but only slightly. The medical assistant who was calling wanted to know if I'd taken the prescribed supplements. I absolutely did... not messing around with this since there are increasing links to Vitamin D deficiency and, oh, cancer, among other things. My NP recommended I double up on the supplement for 8 weeks, go back down to the regular level, and have my blood re-checked again in July. I asked my online mommies about this and learned that there is a link between obesity and Vitamin D not being retained in the body. Sure enough, a quick web search turned up this article, whose URL I forwarded to my NP. I know I need to get more sun, too; it is now my goal to do more walking... outside. Interesting that we've been told for all these years to slather on the sunblock before going outside, and now we're learning that by avoiding one health issue, we may be causing others.

Wednesday was my Big Day. I saw my oncologist, Dr. Rini, to get the results of the scans and discuss our next step.

A fellow doctor who works with him came in first, as always happens at a teaching hospital. I saw her on my last visit so it was nice to have some continuity. She asked if I'd gotten my test results yet. Ah, no, that's why I am here! So she and I reviewed them together. According to all three scan reports, I am ALL CLEAR!!! The scans showed no metastasis. The "only" thing noted was some tiny thing in my lung, which was never a concern to any of my docs, but which has SHRUNK since the scans in January to the point of being almost not visible. Awesome news! So awesome! I was so relieved and excited. Jim was happy too, though as usual he remained stoic throughout the appointment. The fellow wanted to see my open incision, what's left of it that is. She thought it looked good too, but commented that I would have "a divot" in my back. Okay by me if that is the legacy to remain NED. She told us that she's leaving the Clinic in June and going to Case Western Reserve next. She was really interested in my case, and was telling us about the possibility of there being some link between pre-eclampsia during pregnancy (which I luckily did not have, though hypertension has been a legacy of my first pregnancy) and kidney cancer. She was also excited that they have the tumor removed in February as a research tool, to compare with my original tumor... which is also "on ice" somewhere in the bowels of the Clinic. She said that maybe at some point they would be able to provide some clues, and hoped that I would consider allowing her to use them for study in the future. I absolutely would be willing to do that, and told her so.

Dr. Rini came in next and was clearly pleased for me. Interestingly, he was initially not in
favor of surgery to remove this last met, since I'd just had a the other surgery 6 months earlier and this was in a more difficult spot. But the surgeons felt it was a good idea and I am glad they did. I am going to have more scans and bloodwork in July, and will see him again on July 15.

I know I am only out of the woods for the next 3 months until my next scans, but for those 3 months I can consider myself NED. In fact, I told Jim that night that I am already 2 months NED since the surgery was on 2/23. I was prepared to hear otherwise, and had lots of good questions to ask based on all the knowledge I have gotten from my online kidney cancer patient communities. I am so grateful that I didn't have to ask any of those questions. I felt like I was "loaded for bear", yet not having that bear to shoot at wasn't a let down At All.

A couple of people have asked me if I think the mangosteen juice helped bring about this NED status. There is no way of knowing, but I believe it's definitely possible. After completing the 21 day challenge, I'm now "down" to drinking a half a bottle each day for a month. The juice is tasty so that isn't a problem; the gallon of water per day was the hard part, and that is thankfully past now. Another item to ponder is the healing service Jim and I attended in January. At the time I didn't "feel" anything happening, and since Spot was still there the following week, I didn't see any clear result of having attended and having been prayed on. But maybe... Dr. Nemeh's prayers may have stopped the growth of Spot so that he could be removed before sending out cancer cells to other parts of my body. Maybe the prayers helped my body to kill other cancer cells. Only time will tell if my "remission" continues. If it does, I will consider my "alternative therapies" to be at least part of the reason for my good health.

Sunday, April 19, 2009

Great week, sadly come to an end

I just spent the last week on vacation with my girls. Rebecca had spring break from school. She could have gone to a holiday week "camp" but I had decided a while back that I was going to take that week off to give both girls a week of no school. They go all year, which bothers me as a working mom. My surgery in February almost wrecked my plan but luckily not.
Easter was spent at home and at Jim's parents' house, where we had a ton of fun. The cousins have so much fun together... the ages are 16, 14, 6, 5, 3, 2 and 9 months. The baby isn't exactly running around yet but loves to make faces and be held. The teenagers are so good with the little girls, playing with them, carrying them around, etc. And the middle four are a hoot together. Carly particularly loves her cousin Annaliese, who is two. Carly hates being the "little sister" and so when she's around A, she gets to act like the big sister. If it were up to Carly we would have another baby (girl of course, according to her). However, just tonight she pointed out that we can't have a baby because we've given away the baby clothes, toys and crib. I wisely did not point out that were we to actually have a baby on the way, we could purchase those things. Instead, I considered myself off the hook.
During the week we did the following:
Monday - saw the Hannah Montana movie, sneaking Easter candy in mommy's purse for snacking. The movie was better than I expected, and I will admit shedding a few tears during it. (And since I don't generally watch HM on TV, I had no idea that Miley Stewart's late mom was none other than Brooke Shields!)
Tuesday - we were lazy all morning, then went to lunch at Friendly's and spent a few hours at our local library. They have a great kids area and so the girls had a good time. Carly played with all the toys; Rebecca read books. Now that she is really reading pretty well, she loves to sit down with a book in one of the comfy reading chairs. It was great fun and I was able to pick up a couple of audio books for my daily commute.
EDIT 4/20: how could I forget??? During our lazy morning we gave ourselves mani/pedis! Carly has one foot of pink toes and one of purple. Becky has pink and red alternating toes. Both had pink and blue alternating fingers, though those have worn off. Boring mommy went monochrome on each extremity... "ruby slipper" on fingers and daring purple on toes.
Wednesday - we took my nephew Marty with us to the Museum of Natural History. I had not been there in years and was pleasantly surprised by all of the new exhibits, including the outdoor exhibit, where we got to see real bald eagles as well as a number of other birds and animals. They even have otters, who seemed to love Rebecca and Marty. Carly enjoyed the museum too, but Becky really loved it. I hope we can go back again in the not too distant future so she can really absorb everything. I discovered that it is not easy to be the only adult shepherding three kids under age 10. Additionally, having a 3, 6 and 8 year old means juggling very different interest levels. I felt bad that we had to leave some things earlier than one child would have liked, to accomodate the interest or lack thereof of one of both of the others.
Thursday - the cold, rainy weather finally broke and we had a cool but sunny day. We took advantage of the weather by going to the zoo with Grandma Monahan and Annaliese. It was really fun for all of us. We didn't see the whole zoo but spent time really looking at the animals we did see. Since we have a membership, I decided we need to go more often, even if only for a couple of hours, since there's a lot to see. And we haven't even been to the Rainforest yet.
Friday - the weather was even better, so we stayed home and the girls spent the afternoon outside, riding their bikes, using chalk on the sidewalk and driveway, and playing with the next door neighbor's daughter, who is a newly minted four year old. I was able to accomplish a couple of projects from the list of projects that I'd hoped to complete on vacation. Dream on, I know... but I got more done over the weekend so I didn't do too badly in that respect.
We had our moments, and I definitely need to do less yelling as a mom, but all in all it was a great girls' week. Jim wasn't able to take off work, but we talked to him on the phone each day and shared our adventures with him each evening.
This is the stuff of great memories - I want my girls to have a full supply of them. Not that I am planning on checking out early - instead, I hope that they just get to look back and say, Mom, we had such a lot of fun growing up.
Now we have to return to the daily routine. Sadly, I only had one number in the Mega Millions drawing, so quitting my job is not so much an option right now. This week is full of medical appointments, which are not well timed in light of my vacation week, but need to happen, so there it is. I am hoping that next week I can start to push myself to get up and out of the house earlier, so I can leave work earlier, pick up the girls earlier, eat supper earlier, and get all of us to bed earlier. More sleep is needed in this house, for sure. And with Rebecca starting first grade in a few months, we will need to be up and at 'em earlier in the morning, so it will be good to get in the habit sooner rather than later.
Speaking of medical appointments, I have CT scans scheduled for tomorrow morning. I will get the results when I see Dr. Rini on Wednesday (4/22). Please oh please let these scans be clean! I should expect nothing good, but I hope for it so much that bad news will be hard to take. Not impossible, because I know that I will pick myself up, dust myself off and plan the next step if it's needed, but it will be hard at first.

Wednesday, April 15, 2009

Finally I have closure

The "hole within the hole" in my side/back has closed. It was down to the width of a pencil eraser, then a pinpoint. Last night my "home care nurse" confirmed that it is closed. There is still an outer hole or depression, maybe an inch long, that still needs to be covered until it heals, but the tunnel to my innards is now closed. Hooray! Last night my bandage was almost dry, and I'm hopeful that the rest of it will fill in soon. It's been seven weeks, so much for the surgeon's "two weeks or so". But it could have been much worse, in the scheme of things.

Saturday, April 04, 2009

How is it April already?

My head is as always buzzing with thoughts. My health has of course been front of mind. My incision is mostly closed but is still being packed a little. It went through a period of very rapid healing, but for the last week has looked pretty much the same. Coincidentally, the slowdown has coincided with me starting a regimen of mangosteen juice to boost my immune system. A close friend of my sister's had her try it, because her rheumatoid arthritis has gotten severe. She says she is feeling better since starting to drink it. There is a 21 day challenge to get you pumped up, as it were; you can see a description of it here. I am currently floating along on day 10... I have not quite been able to dring a whole gallon of water but have definitely been drinking a LOT. Do I feel any different? I do feel some more energy, and will see what time brings. Many people refer to products like XanGo as snake oil, call it a pyramid scheme, etc. And yes, it's expensive. But I am starting to look more closely at changing my diet to eat more immune building foods, and I'm using this as a kick-start in that direction. I don't know what the future will bring cancer-wise, so it behooves me to be as healthy as I can in general.

My next CT scans are on April 20 and I'll see Dr. Rini on the 22nd. I am of course praying hard that my scans are clear; my pessimistic side is not holding its breath. Since this last surgery I've been more active on the Kidney-ONC ACOR email list - an online friend (hi Bonnie!) had recommended checking out ACOR when I was first diagnosed. I subscribed to the mail list but changed my status to no-mail right away because I couldn't handle the messages... didn't want to think of myself as having to to deal with metastatic disease. Right now I suppose I am technically NED but NED is only as good as your last scans. There are lots of ways things could go if more Spots are found this time. The most likely would be systemic therapy; that is, therapy with drugs. I've been researching treatments that are available if I need drug therapy. There is one that is really rough but is the only one that can produce a CR, or Complete Response, in some people. This treatment is called HDIL-2 which stands for High-dose IL-2, using the drug Interleukin, an immunotherapy drug. High doses of IL-2 are given to the patient in a hospital setting. This is necessary because the drug is, obviously, very toxic and strong side effects can be experienced.

The Clinic doesn't offer the treatment; only 2 places in OH do, and a fellow patient of my onc was advised to go to Beth Israel-Deaconess Hospital, in Boston, for treatment. I checked my health insurance coverage; of course Beth Israel isn't part of my tier 2 national network, and I don't even know if the treatment would be covered anywhere. I am hoping that I won't have to worry about it, but if it comes down to it, I will appeal to the health plan folks on the basis that because we don't offer the treatment at the Clinic, I should be able to go elsewhere for it. The effects of the treatment sound horrible, but if I need it, I want to give it a shot. Also, there has been some research in which people who were treated with a different RCC drug, and later had HDIL-2, experienced heart problems. Some of the folks on my email lists are also of the belief (anecdotal but entirely possible) that even if the HDIL-2 didn't result in a complete response, it may have helped to hold future growth at bay.

The entire preceding paragraph is a demonstration of my constant need to think ahead several steps. I don't know if I will EVER be in a position to have to consider any systemic treatment. But my mind always just has to "go there". I've said before that I think part of the reason I got cancer was to teach me patience; right now I am not a very good student. Over the weekend I was discussing treatment options with Jim, and asked him if he thought I was being too obsessive about it. He told me no, that arming myself with information is a good thing. On the other hand, too much knowledge is sometimes frightening.