Saturday, February 27, 2010

jack-sat 2/27/2010

I am writing this blog to allow Nick time to take over complete pentagon operations!
marked improvement has been made in kidney function, bone building and pain reduction.
Dr. York and caregiving staff at Piedmont Hospital have analyzed blood and administer i.v. concoctions precisely to normalize all body functions and allow positive mental attitude to be developed by communications with you, my supporters. Please continue. I feel your support directly from God. Flashes of each message accompanied by that giver's facial image appear to me at all times of the day and night. I know it is God's way of allowing me to see through Him, his grace is flowing. There is no higher gift. I must persevere.
Yesterday I walked a mile outside, twice, slept well only awakening 8 times to clear toxins from my kidneys and felt no bone pain. As treatment increases there will be more ups than downs.
You give me confidence that the research world will be successful in time for me.
Love, Jack

Saturday, February 20, 2010

More Good News

It's been a slow week on the blog as I (Bobbie) am in D.C. visiting Nick, so the usual update train isn't on track. Also, unlike previous weeks when he was at the hospital every day, Jack only had to go to the hospital for treatments on Tuesday and Friday, so there weren't too many new items to report.

So here we have another update from Lia:

Mom & Dad had some alarmingly good news yesterday, Friday the 19th of Feb at Peachtree Fayetteville hospital. Dad's kidney numbers are now down to 2!! so he can start chemo again!! They may even have been lower if we knew the juice he was drinking had potassium in it -- we would not have given it to him. No more prune juice for you!

In addition his rash is gone. It had been a side effect of the pain med, an all over burning rash, like fire ants. Gone!!

And the bone building steroids will now start regenerating his bones. And he had a boost to his confidence. He was able to walk down four flights of stairs. He reported to me he did that during a fire drill they had at the hospital: That he was strong enough to walk down four flights of stairs..and even went outside in his slippers. (read slippahs).

I also talked with Jeannie yesterday and she told me it was a very good week as well. The weather is finally becoming a bit spring-like in Fayetteville which helps to improve everyone's mood. As Lia said, next week should bring reports of the chemo treatments.

Tuesday, February 16, 2010

from lia

lia's report from Fayetteville

Hey Nick, Thanks forall the great work you have done creating this blog for us and the google calendar for dad's meds. Auntie Rita and Uncle David said a big thanks for the blog!! Also I want to continue by saying thanks to all the folks who have been offering to do things which we all really appreciate. All your offers, well wishes, words/cards of moral support have been so uplifting and helpful. I can't tell you how much... My mom just said again -- "Thanks for all your concern."
It really was not that much of a snow storm. And I just filled in where they needed, things like some of the cleaning my mom can't get to while taking exceptional care of my dad. He has been experiencing a mixture of side-effects, rashes, pain and some sleepless nights. He has genuinely done better for the past few days my mom said. Gee gave me all that good advice as I was driving here (and asked him) because I knew he went through something like this. His advice (to listen) is such good advice and I have been here to listen -- and my dad has ideas of how things will change when we gets through this -- which speaks volumes for his attitude, his faith, his trust in the doctor and his primary caregiver (my mom) and all the wonderful selfless folks they've encountered at the Piedmont Fayetteville hospital. He feels very relaxed there -- and that is saying a lot. ;-) On the home front, the only thing you'll notice is his closet now looks like a fashion store (his words about how I fixed it). My mom and I worked all afternoon then I took an 'SUV full ' of clothes to the charity. Then I got him a few new things he needed at the store and in general gave my mom some moral support and assistance. BTW -- my dad looks good -- which is why it is sometimes hard to see he is sick. He is doing everything he is supposed to. He soldiers on -- they go to the hospital today; I drive to Tampa; and the next reinforcements (Jena and Joey) come in on the weekend.

Sunday, February 14, 2010

new thank you shoutouts

thank you so much to the Feldman, Weiss, Dirring, and Lavoie Families. Joanne put together a couple of real beauties; some therapeutic chicken soup and eggplant parm. Uncle Warren has brought over some delicious homemade pasta sauce and chicken cacciatore. Priscilla and Diane brought over a delicious meal of ham, corn casserole, sweet potato casserole, rolls, tortellini soup, and chocolate cake. This all has definitely alleviated some need to cook, was delicious and nutritious by all accounts, and was a huge morale boost. thanks again all you compassionate chefs ;)

also, thanks to Auntie Meri for helping Dad out with some of his critical paperwork. immensely helpful.

shout-out too to Lia for braving the snowstorm and driving up to Fayetteville this Saturday morning. she's been helping organizing dad's clothes for easier access to his doctor-visit outfits. also, she's been helping around the kitchen and living room, and making a nice little walk-way dad can follow as he does his walking exercises in the house.

last, but not least, thanks too to Gee for passing along some really insightful advice. i paraphrase "essentially, going through cancer and chemo is a world-shaking experience and makes you question all your actions, lifestyle and priorities. as you sift through the shake-up its very helpful to just have somebody around that you can talk with as you assess your new life strategy. the best thing you can do to help someone going through chemo is to be a good-listener." thanks Gee, great advice.

Saturday, February 13, 2010

fight scheduled

dad's check up yesterday went well. based on kidney progress, the doctor was able to go ahead and schedule a re-engage with the revlamid; the cancer killing pill.

pain pills had been slightly less and less necessary, but last night was a tough night. the doctors instructions are drink plenty of fluid and keep getting some movement throughout the day. moving around is almost impossible without taking some pain pills, and the stress is counterproductive too. the pain pills are a necessary evil at this point, but have allowed him to get his kidney strain relieved, so that he can now get back to the revlamid.

the really good news is that he's decided to scale back his impassioned financial analysis. he's decided that it and the economy overall was too much of a source of stress, and he can live comfortably without it. we will miss having an expert financial analyst around ;), but cousin meri is quickly becoming a capable financial engineer, between Bobbie Bill and Chandler Russell i think we have taxes under control, and i try to keep up with the economy ;) . overall, i think this is a smart self-medication.

keep the prayers coming, gonna need them for fight night, 23 Feb re-engage with revlamid chemo.

Thursday, February 11, 2010

kidney level update

yesterday's doctor visit was successful. it indicated that the high kidney chemical levels are continuing to drop; from 6 now down to 2.86. like Bobbie mentioned, once back ~1.5, the doctor can re-commence an aggressive attack on the cancerous cells.

things are still pretty tough for the interim. since pain induces stress, which elevates the strain on the kidneys, the doctor has continued to request continual use of strong pain pills. the pain pills make many of the usual operations around the household more complicated. we look forward to when we can scale these measures back; when the kidneys have returned to normal conditions.
other complications in the interim consist of a rash outburst, and swollen ankles and lower legs. the doctor is aware of these conditions and considering them in his prescriptions of treatment.

the way to return the kidneys to normal condition is to go in for frequent saline infusion flushes. mom and dad have been pretty diligent going to the doctor almost daily to get these infusions.

have to give a shout out to bobbie who's been very helpful; cooking some dinners while my parents are gone at the hospital all day, baking cookies, running errands, trying to lighten the conversations, and so forth all while doing her accounting work on the computer and taking care of roger and being pretty pregnant. thanks for all your help babe; you're the bomb!
also a shout out to my mom, who's been attending to every detail of my dad's recovery and riding the emotional roller coaster for just about 2 whole months. that's pretty tough. hang in there ma, you're doing great!
and to dad, you are doing great, keep up the fight.

additionally, Lia's driving in for the long weekend and Jena is on standby with tentative plans for the following weekend.

keep up the prayers, and thanks for all your support. ttys.

Tuesday, February 9, 2010

Eye Witness Account

Hi Everyone. This is Bobbie reporting. I went to the hospital with Jack and Jeannie for the doctor visit and infusion treatment today, so I thought I'd do the update. Dr. York was pleased with Jack's progress so far regarding the kidney repair. Jack's kidneys have been slowly improving since they started flushing them last week, and his Creatinine level has gone down to 3.09 from over 6.0 last week. They are looking for the level to be below 1.5 to show that the kidneys are performing normally. So for now, the infusion treatment just consists of flushing the kidneys with fluids. Hopefully the Revlimid treatment will begin again as early as next week - that is the real cancer-fighting treatment. Jack is very anxious to get started killing the cancer, of course, and is doing everything recommended to help the kidneys repair themselves. It will just take a little bit more time.

Dr. York told Jack that he should be working towards getting back to a somewhat normal lifestyle, i.e. eating normal foods with a few restrictions related to the kidneys, walking around, and going outside (when it finally gets nice out). This all has been a challenge due to pain, swollen ankles, and lack of appetite among other things, but eating healthfully and moving around will help things along. Tonight he enjoyed one of Jeannie's delicious pork fajitas, and I think possibly a chocolate chip cookie! Definitely an improvement from Jell-O.

The Hematology/Oncology facility at the Piedmont Fayetteville Hospital is very nice and inviting. All of the doctors, PAs, nurses and other staff are extremely friendly and caring. Jack and Jeannie are already very friendly with several of them, and we are all very happy to have such great people treating Jack and keeping spirits up during the visits.

So, three more visits this week, and then hopefully next week will be the beginning of the next stage in the treatment (and Jack will only need to go to the hospital twice a week).

On behalf of the whole family, thank you all for your thoughts and prayers. Jack may not be up to taking phone calls, but he appreciates the messages you leave with Jeannie or me or on the machine, and especially the cards at this stage of the game because this week it is tough for him to talk on the phone. Every evening Jeannie reads all of the thoughtful cards that arrive in the mail to Jack, and they both are very touched by your loving and encouraging words.

Monday, February 8, 2010

new med combo

after checking in with the recovery ward (mom and Bobbie), the latest drug combination needed for progress has been a temporary setback. he is under a lot of pain, has to take the pain meds a little more frequently than before which has other side effects, but he has to stay ahead of the pain because it causes stress and makes the situation worse.

hopefully this status will not last long. on the pain meds its really tough to talk on the phone, or even watch tv. with luck, the work behind the scenes will be effective and these meds can be relaxed soon.

status 5 Feb

i just got settled in up here in DC right before they sent everybody at the Pentagon home before this record snow storm hits. i'm at my hotel now.
was just talking to Bobbie, Mom, and Dad and wanted to relay the latest news.

The doctor has had to adjust dad's medication, which is normal. they start out with best estimate dosages based on some vitals, but may need to adjust based on how the much the medication beats the body down relative to how much it beats down the cancer cells. the initial dosages were beating dad down a little too much, and really putting strain on his kidneys and anemia relative to how much they were beating down the cancer cells.

The doctor asked dad to drink lots of water and walk around a lot to help relieve the strain and strengthen the kidneys. Also to relieve strain on his kidneys he said no carbonated beverages, no citrus, and no calcium drinks; but lots of water. He also told him to eat a steak for iron to help cure the anemia. He said, "the stronger your kidneys get, the better i can kill the cancer."

alright, i hope this email finds yall well, and you have good weekends. geaux saints (who dat). peace. love. talk to you soon.

the bear online

wanted to let you know that dad is on my extra laptop periodically. so, if you send him an email he's receiving those, and if you see him available on video chat, the laptop has a built in webcam and a green video camera means he might be online and able to take your video chat.

(for you google talk and video chat users out there, if you don't know my dad's gmail address, leave a comment to this post and i'll email it to you).

status 29 Jan

we just got back from the hospital from treatment day 1, and i have a couple minutes so i wanted to provide you guys a more complete explanation of the status besides what mom and i've been able to communicate so far.

here's the deal. the doctor is extremely intelligent and genuine, has a special rapport with dad, and i trust him 100%. he is certain that Dad has mm, but that treatment for mm is generally very effective, and dad is in the category of people that respond well to the treatment, and the doctor gives dad a 90% chance for full recovery in 6 months of treatment. not only that, mm is the type of cancer that, if you have to have cancer, would be the best type to have. the treatment, an assortment of drugs, attack the cause almost directly. from this point forward he should feel better everyday with some possible episodes of swelling, rash, and intermittent pain as the doctor refines the proper blends of meds based on dad's reactions. i think this is great news. just like the video lia emailed a link to said, mm is not curable, but neither is arthritis, but it is totally manageable. most patients, at the end of the 6 month treatment, are in pre-symptom shape and can exercise and be active. all the symptoms, including the bone degradation, anemia, and kidney strain are all revertible.

dad's current pain symptoms are due to the following effects of the metastasis of the blood cells. he has had bone degradation in multiple areas (skull, femur, pelvis), and the excess calcium from these areas that has fallen away along with the excess protein in his system have put his kidneys under a lot of stress (hence his back pain), and the extra resources to his white blood cell irregular growth have detracted from his red blood cell count and hence he is anemic. all that pain required him to take some pain pills which have made him constipated, ... You can start to see how the one source has created a snowball of negative symptoms, but as the treatment starts to melt away layer after layer, and cure the root cause, he can and will ultimately return to original condition. the treatment consists of about 4 major and 2 minor drugs (which actually come to a couple $K a month, but a small price to pay, and after a few k, insurance will pick up 95% of the rest). 2 of the drugs are administered with iv by the clinic (which has a location in fayetteville) and dad will go for those on tuesdays and fridays. we had to go in town today for it, just because it was the first one, but the rest will be much closer and it's the same doctor. the remainder of the drugs are administered orally (by pill) according to the schedule on the calendar i shared this morning. one drug is a steroid that quickly regenerates the bones, one drug is considered chemo and attacks the metastasizing cells, one drug treats some cold sores that some patients experience as a side effect of the chemo pill, and i can't remember the fourth off hand, but have it written down.

anyway, wanted to share these details now that i had a couple minutes. hope it helps fill in some gaps.
haven't eaten since breakfast, and bobbie just put together something that smells really good, so i'm gonna grab a bite right now.
love you guys, hope you find this info as uplifting as i have. talk to you soon.

the meds


this blog will serve to update friends and family of my dad's recovery after being diagnosed with multiple myeloma. thankfully so many family and friends have expressed concern and willingness to help. now that i've had to go to DC and only mom and Bobbie are at the house to help, it's sometimes tough to always answer the phone and be able to grant a good conversation. in response, this blog will serve as a recovery status update. check back as often as you like (or just rss for those techies out there). don't get me wrong, all calls are much appreciated, and often my parents really enjoy those calls as outlets, but sometimes they're preoccupied. in those situations, if you want to get the status update, this is the place for you. again, thanks for all your help, concern, and prayers that are really helping the bear along.