Carphoria noun (karforeeah) OLD ENGLISH
The experience of exhilaration felt while driving home in your wife's convertible roadster with the top down in 65 degree mid-December weather from your Velcade (chemotherapy) injection appointment which is then augmented by having the general euphoria that comes 8 hours after ingesting large doses of steroids (Decadron) which makes you slightly hypo-manic prompting the playing of rock music at level 11; way louder than either your wife or audiologist would allow. Finally spiced by the wearing of shades, fedora and a care-worn leather jacket with the setting sun scene in the rear view mirror.
Speaking of Velcade, I have learned a few things about how best to receive it. First, and foremost, get it injected subcutaneously. It is just as effective and has less peripheral neuropathy complications. (see review on AmmyloidHope.org) Second, ask the nurse to inject it deep. The very first time I got it, the nurse placed the needle under the skin superficially by inserting the needle at an angle as she entered. This resulted in the drug both irritating the dermal layer of the abdominal skin and also getting absorbed into the skin lymphatic system. Within three days this caused severe skin inflammation with red-purple lines tracking to the groin where the now inflamed lymphatics drain.
The next week I asked the nurse to push the 1/2 inch needle perpendicular to the skin and all the way to the hub. I actually grab my abdominal wall to give them a deeper target so that it doesn't hit muscle. It's almost painless. The area still turns faint red is is mildly painful to touch, but it resolves in a few days instead of two weeks. Since I often have a different nurse each week, I offer a gentle reminder before they take the plunge.
Little things can make a big difference.
Kevin
Showing posts with label Velcade. Show all posts
Showing posts with label Velcade. Show all posts
Tuesday, December 17, 2013
Thursday, March 28, 2013
All Things Being Equal
I am fascinated with words, even more so with phrases. I wonder how they get crafted and adopted. All things are rarely equal. But it helps to attempt equality when deciding between things. Currently all things are going well, and yet they aren't. I am reminded of this in the blog post that Rebecca so courageously shared yesterday about dealing with a miscarriage. a-wretched-life
I am proud of Rebecca and Jason for their faith and perseverance. We so love our children and want them to be happy. But there will always be days that are sad.
I continue to do extremely well with my health. No changes of note. I still get Velcade weekly along with my Decadron. There are, however, some promising new drugs on the horizon that may change the course of my disease. I will keep you updated. Work is going well and I will be working with Kaiser to develop a video for patients newly diagnosed with prostate cancer. I wrote the script and will be in front of the camera. I'm trying to lose 10 lbs so that I look better on computer screens around Northern California.
Barbie has been working consistently in temporary positions as an RDH and is considering some more permanent options. She is a great hygienist.
We recently returned from a very romantic cruise to the eastern Caribbean. We visited Turks and Caicos, San Juan, Puerto Rico, St Thomas and a private island that Holland America owns called Half Moon Cay. We had such a relaxing week with 7 days of no cell phones, no Internet and no schedule. The sea was a beautiful clear turquoise, the water was warm and the few fish that we saw enough to say we snorkeled.
The basement of the Provo house was finally finished and Caitlin and Ben moved in on Monday. It is not a typical BYU basement apartment. Barbie's friend, Wendy Ormsby is an interior designer and, working with her contractor, Jeremy Brown, were able to take Barbie's vision and create a wonderful 'space'. Caitlin is delighted to have a little more room for her womb as she is now in her 17th week and wants to nest. Once I get the before and after shots of the basement, I'll post them.
With the book done and a grandchild on the way, my previous bucket list had officially expired. While watching the ocean from our stateroom balcony I penned a new one. It has some fun stuff like reading Dickens, learning French, doing a culinary experience in St Helena, CA and riding the Orient Express from Paris to Istanbul.
I hope to continue writing, both here on our blog and other places as well. Maybe if the prostate cancer video plays well, I might get a call from Kaiser Hollywood.
Kevin
I am proud of Rebecca and Jason for their faith and perseverance. We so love our children and want them to be happy. But there will always be days that are sad.
I continue to do extremely well with my health. No changes of note. I still get Velcade weekly along with my Decadron. There are, however, some promising new drugs on the horizon that may change the course of my disease. I will keep you updated. Work is going well and I will be working with Kaiser to develop a video for patients newly diagnosed with prostate cancer. I wrote the script and will be in front of the camera. I'm trying to lose 10 lbs so that I look better on computer screens around Northern California.
Barbie has been working consistently in temporary positions as an RDH and is considering some more permanent options. She is a great hygienist.
We recently returned from a very romantic cruise to the eastern Caribbean. We visited Turks and Caicos, San Juan, Puerto Rico, St Thomas and a private island that Holland America owns called Half Moon Cay. We had such a relaxing week with 7 days of no cell phones, no Internet and no schedule. The sea was a beautiful clear turquoise, the water was warm and the few fish that we saw enough to say we snorkeled.
| Half Moon Cay |
With the book done and a grandchild on the way, my previous bucket list had officially expired. While watching the ocean from our stateroom balcony I penned a new one. It has some fun stuff like reading Dickens, learning French, doing a culinary experience in St Helena, CA and riding the Orient Express from Paris to Istanbul.
I hope to continue writing, both here on our blog and other places as well. Maybe if the prostate cancer video plays well, I might get a call from Kaiser Hollywood.
Kevin
Labels:
Amyloidosis,
half moon cay,
miscarriage,
Velcade
Thursday, September 22, 2011
Wow Squared
Finally I have figured out the elusive equation that defines personal happiness (at least for this week).
It follows that happiness equals:
Weekly Happiness = Children's Happiness (N^7) x (7-[n2+n3])days/week x WOW^2
WOW^2: Wow squared represents what I uttered out-loud today as I clicked on that final result from my electronic medical record (being an MD has its percs) and seeing the number 38 staring back at me. (20 is normal.) This is the lowest that my Kappa light chains have been in recorded history, Wow................Wow!
For those interested in the treatment of amyloidsosis this resulted from the conversation I had last month with Dr. Schrier. Revlimid had stopped making a noticeable difference, therefore Velcade (or Bortezomib) was added (not replaced.) The Kaiser Cancer Clinic now gives the weekly Velcade dose subcutaneously as opposed to intravenous. This is reported to decrease the side effect of neuropathy. This may be true as my neuropathy has only slightly worsened, (above my usual baseline of tingling toes,) after 4 doses. Unfortunately, it also causes skin reactions at the injection site. The first was the worst, however since then I have asked the nurse to inject with the full needle perpendicular to the skin to bury the dose as deep as possible. The last three have had much less of a reaction. I got very sick from Velcade two years ago, but haven't had that reaction this time. I am now off my Revlimid for a month, but will continue weekly Velcade and dexamethasone. I will repeat the Kappa level in 4 weeks. If it remains low, bye bye, Revlimid. Does a lower kappa chain level indicate I will live longer and prosper? Fascinating question; no answer. Hopefully.
All of our children are happy this week. 2 daughters-in-law both got great jobs this week to support their twin husbands as they begin graduate school (deja vu all over again). Son-in-law loving school supported by my daughter as she starts her career in her dream job. (As seen on TV) Youngest daughter voraciously attacking her first semester of college with aplomb, while being wooed by a very nice and overly eligible young man. I once heard a wise man say that a parent is only as happy as their saddest child. In this case the inverse remains true while the contra positive paradoxically is not. (at least not relevant). Furthermore, the increase does not occur linearly, rather exponentially. Children's happiness N (number of children)^7.
Some days the drugs steal my joy for a little while; usually 2 days after the dexamethasone for 2 days. Hence the (7-[n2+n3]) giving 5 goods days a week.
All in all this represents a whole boatload of happiness. I am going to bottle up some of it and share it with others. This is clearly too much to keep for myself.
Kevin
P.S. I just noticed that it is 12:01 A.M., Happy Birthday, Rebecca.
It follows that happiness equals:
Weekly Happiness = Children's Happiness (N^7) x (7-[n2+n3])days/week x WOW^2
WOW^2: Wow squared represents what I uttered out-loud today as I clicked on that final result from my electronic medical record (being an MD has its percs) and seeing the number 38 staring back at me. (20 is normal.) This is the lowest that my Kappa light chains have been in recorded history, Wow................Wow!
For those interested in the treatment of amyloidsosis this resulted from the conversation I had last month with Dr. Schrier. Revlimid had stopped making a noticeable difference, therefore Velcade (or Bortezomib) was added (not replaced.) The Kaiser Cancer Clinic now gives the weekly Velcade dose subcutaneously as opposed to intravenous. This is reported to decrease the side effect of neuropathy. This may be true as my neuropathy has only slightly worsened, (above my usual baseline of tingling toes,) after 4 doses. Unfortunately, it also causes skin reactions at the injection site. The first was the worst, however since then I have asked the nurse to inject with the full needle perpendicular to the skin to bury the dose as deep as possible. The last three have had much less of a reaction. I got very sick from Velcade two years ago, but haven't had that reaction this time. I am now off my Revlimid for a month, but will continue weekly Velcade and dexamethasone. I will repeat the Kappa level in 4 weeks. If it remains low, bye bye, Revlimid. Does a lower kappa chain level indicate I will live longer and prosper? Fascinating question; no answer. Hopefully.
All of our children are happy this week. 2 daughters-in-law both got great jobs this week to support their twin husbands as they begin graduate school (deja vu all over again). Son-in-law loving school supported by my daughter as she starts her career in her dream job. (As seen on TV) Youngest daughter voraciously attacking her first semester of college with aplomb, while being wooed by a very nice and overly eligible young man. I once heard a wise man say that a parent is only as happy as their saddest child. In this case the inverse remains true while the contra positive paradoxically is not. (at least not relevant). Furthermore, the increase does not occur linearly, rather exponentially. Children's happiness N (number of children)^7.
Some days the drugs steal my joy for a little while; usually 2 days after the dexamethasone for 2 days. Hence the (7-[n2+n3]) giving 5 goods days a week.
All in all this represents a whole boatload of happiness. I am going to bottle up some of it and share it with others. This is clearly too much to keep for myself.
Kevin
P.S. I just noticed that it is 12:01 A.M., Happy Birthday, Rebecca.
Labels:
Decadron mood change amyloidosis,
Revlimid,
Velcade
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