A Caregiver's Inspirational Journey Through Cancer
Jul 17th, 2010 by Lori Puente
Originally, Dave and I were to pack up the Brookeville house and Kip and I would stay with my neighbor Gail. I would keep working and then take vacation and head off to Egypt with a group of folks, primarily my friend Paula, who owns Rosehaven in Lexington, Kentucky. Continue Reading »
Jul 13th, 2010 by Lori Puente
LIFE can seem harsh at times
It can seem somehow unfair
Why me?
A fair question.
But why not you?
Why someone else? Continue Reading »
Jul 9th, 2010 by Lori Puente
I’ve been avoiding writing a post on this… why? Because what works for one, or some, doesn’t always work for others. When you have cancer, migraines, back problems, depression or a whole host of other chronic illnesses, people come out of the woodwork to tell you what to try or what they read or what works for them (I’m guilty). Sometimes its helpful, and unfortunately, a lot of times its not. Continue Reading »
Jul 1st, 2010 by Lori Puente
Welcome to my new WordPress, Bluehost hosted, Riding the Wave Blog. I hope you like it and if you went to my old one on blogger and found yourself redirected here, I’m happy you found me! Much thanks goes to my friend and former co-worker, Bari Mitchell, at the University of Maryland. She spent time with me on the phone to discuss my options and help me make decisions and get everything migrated over. She has continued to help me with those little nagging issues of learning a new “engine” so to speak.
So I hope you like my new cyber digs and that you will bookmark the new blog in place of the old one and leave me words of encouragement of things you like. It will be evolving as I learn how to use “plugins”, “widgets”, “tags”, “categories” and the like. Continue Reading »
Jun 29th, 2010 by Lori Puente
OMG! Dave and I both forgot our anniversary on the 27th! ARGH! We did this once before and the only thing that saves us is that we both forgot! Gross, I know. But neither of us remembers this sort of thing very well. He had just gotten out of the hospital two years ago when he was diagnosed and I remember he was lying in bed and I said, “Well honey, Happy Anniversary, I love you.” He said, “Happy Anniversary and I love you too.” Last year I think we did something, but I can’t remember at the moment. Is chemo brain contagious or is it just menopause? Continue Reading »
Jun 23rd, 2010 by Lori Puente
Hello dear friends! It has been too long since I’ve posted.
1) I been working on improving it and learning about wordpress and garnering help from my dear friend Bari
2) I’ve been wonderfully BUSY!
How wonderful it is for Dave and I to be living our lives unconsumed with Myeloma and treatment and, and, and…
Arriving
Our biggest news is that our son Hudson has graduated from UMD with a dual major and is engaged in a professional internship in Orlando, FL. It was a fun filled day of celebration with friends and family, enjoying the accomplishments of this moment in his life. This photo of him walking up to greet us all is when I cried. Dave sniffed when his name was called and he walked across the stage.
From there, Dave drove with Hud to Florida to get him settled in and then flew off to a business trip in the Northeast for work.
Montana and I, headed out the same day for the West Coast. She had never driven across the country and we were driving straight through with one stop if needed. Taking turns at the wheel and sleeping in the backseat to get refreshed for our shift. Continue Reading »
Mar 19th, 2010 by Lori Puente
I’m taking a post break from my blog today and writing instead about Dan Patterson. (His blog “The Scoop on Dan”) Continue Reading »
Mar 18th, 2010 by Lori Puente
July 2008
Oh god!
Dave has been having uncontrollable and violent hiccups. We think its tied in with him being so profoundly constipated. But we aren’t totally sure, except that when he can have a bowel movement the hiccups seem to go away for a couple days. So we “think” its gas building up with no place to go, but what do we know? Dave has several things working against him. The Myeloma causes constipation, as do the narcotics and the Thalidomide he is on to beat back the Myeloma. Add to that, general inactivity and poor Dave is just like a salmon swimming upstream on this. He is already so annoyed with all the pills he has to take and now he needs to add things to help him go to the bathroom. He keeps wanting to treat it like its and “acute” condition vs. a “chronic” one. Continue Reading »
Mar 15th, 2010 by Lori Puente
July 3, 2008
“It is so good to have the office come to life again! It felt like a house with a clogged drain on holiday with a lot of visitors, when you were gone… ” My wonderful boss’ email to me upon my return.
So I’ve been home now for about a week. Closed on the house, back to work, packing, strategizing, planning, checking in on Dave and Hudson and on and on. Overwhelm doesn’t even seem descriptive enough to describe the pressure I feel at different points in the day. Sometimes, being at work, walking the dog, chatting with a friend is a respite from all that is occurring. Sometimes, it just adds to it all. I’ve noticed I’m sighing a lot. Its been hard for me to catch up with Dave and Hudson with the 3 hour time difference on a regular basis. Continue Reading »
Mar 14th, 2010 by Lori Puente
Sat & Sun, June 28 & 29, 2008
Well Hudson made it in from the east coast to take over the care of his father so I can leave the west coast and head back to close on the house, resign formally from my job (set a date), work out the details with my boss, pack the house (ARGH!), go to the going away party for Dave and I, and make the move (which should be sometime around mid to late July). Continue Reading »
Mar 13th, 2010 by Lori Puente
Saturday, June 28, 2008
Dave slept and slept after our trip out to see the house. I was a little concerned he would have trouble sleeping in the night, but he didn’t. It was really good for him to be able to rest so thoroughly.
Our wonderful friend Mari sent Dave some of her killer cookies in the mail yesterday! YUM!!
My phone battery will barely hold a charge anymore, sigh, another thing to handle.
Got the Washer/Dryer ordered. That’s done.
Today I need to boot Dave out of the guest room for a while so I can clean it up and get my stuff packed. It looks like a bomb went off in a rag factory (as my grandmother used to say!). Continue Reading »
Mar 13th, 2010 by Lori Puente
Friday, June 27, 2008
Today we got Dave’s meds from the Specialty Pharmacy. When you have highly controlled substances like Thalidomide, it can’t be carried or dispensed by a regular pharmacy. Dave has to do an interview each time a prescription is filled. Continue Reading »
Mar 13th, 2010 by Lori Puente
Wednesday, June 25, 2008
Today the Cancer Center seemed to be having some scheduling issues, I think the machine was “down” and needed some repairs. So after rescheduling us twice we finally made it over there around 3pm. It screwed up my day a bit with plans to go to the grocery store and make dinner for everyone and so on. But like many plans that go awry, something cool and wonderful occurs. Continue Reading »
Mar 13th, 2010 by Lori Puente
While Dave was in the hospital they started radiation treatments to his T8 vertebrae area. Because Dave couldn’t move hardly at all without tremendous pain and effort, “people” were sent to get him. “People” turned out to be an ambulance crew. Ok, so we are across the street from the Cancer Center and Dave had to be taken out on a gurney, into an ambulance, driven across the street, taken in, radiated, back into the ambulance, across the street, into his bed. This little diddy costs $1,000. We racked up quite a bill. Now I understand the ambulance folks need to get paid, but I have to say, why wouldn’t a wonderful hospital like Rideout Memorial and the UC Davis Cancer Center have provisions for this? I could see it and I could walk to it. A skywalk, internal personnel, something. One of the more INSANE things you deal with when serious illness hits you the way it does. What are you going to do?
Feb 25th, 2010 by Lori Puente
November 4th, 2021: I’m in the process of cleaning this up. It is a grammatical mess! You’ll get the gist, but do check back. Lori
This is an article I was asked to write after a bit of a debate regarding the treatment at Little Rock. It was initially posted on Pat Killingsworth MM blog in 3 parts. I’m going to repost here for you. I
Why I chose a research facility vs. a “treating” physician…
I worked for the University of Maryland‘s Center for Environmental Energy Engineering. I was their sole administrator; it was a small group of highly respected, hard-working research professors with about 40 graduate students, primarily PhD-seeking students. My director is world renown in his field and was an Editor of an archival quality research journal published by the “society” representing his area of expertise. Part of my duties was to manage papers submitted for peer review for publication in this Journal. The society used an online publication management program, commonly used now by all the major journals. Allowing authors worldwide to submit their papers electronically and then for the Associate Editors (we had 12) to organize and invite “reviewers” to review these paper submissions. This process from paper submission to publication (should they be that fortunate) took 18 months to 2 years, i.e., print and mailed to subscribers. I won’t bore you with all the details as to why that is. Still, everyone is busy; they don’t get paid to do this. It is an honor, but it is work to pour through someone else’s research paper, examine the evidence presented, check the calculations, check references, etc., and then make a recommendation. Very few papers get to publication in the first three months. Edits are often required, challenges to claims made, etc., and then it has to go back through again and so on. Once approved, they go into the following available journal publication, as the actual publication process is another couple of months, so they get in line. Continue Reading »
Nov 15th, 2009 by Lori Puente
Its daunting when you sit back and realize that in the midst of all this turmoil, I’m trying to keep many plates in the air regarding housing, moving, job resignation, the children, etc.
In our house searching in California, we learned that homes here are not sold with refrigerators! In Maryland you are required to sell a house with a fridge, but nowhere else in the country is that required. I’ve never ordered a fridge before! Its not like I wouldn’t have liked to mind you, but we just always used the fridge that came with the house and it was always fine. Nothing fancy, but adequate. At times I have looked and dreamed about what I would like to have instead, so I wasn’t completely in the dark. I new what I wanted and what I liked, but who has time in the middle of all of this to go shopping for a refrigerator. The house is in Elk Grove, I’m staying in Yuba City, I’m going back to Maryland! ARGH! Continue Reading »
Jul 22nd, 2009 by Lori Puente
In Little Rock, they simply commence treatment. If however, you are like most of us, and you have a general oncologist treating you at diagnosis, and your doc doesn’t refer patients to Little Rock, you are put on some sort of “oral” chemotherapy in the interim before SCT. (Stem Cell Transplant)
Thalidomide is the drug given to women in the 50s for morning sickness that produced a huge number of what became known as “flipper babies”. The birth defects were so profound and widespread that the drug was pretty much banned worldwide. Needless to say I was a little taken aback. Dave had no clue, but boy I did. Well it turns out that several years ago, some scientists in Israel started playing around with it and discovered it did some amazing things in the blood cancers. It was one of the huge turning points in the treatment of MM patients. So as long as Dave wasn’t getting girls pregnant he was in the clear to use it. Each month he has to answer a questionnaire with some group at the Federal level about his sexual activity. Our doctor apologized, but it was the rules. I laughed and said, “Well, if he gets some girl pregnant, I will be pretty mad. If he gets me pregnant I’ll be REALLY MAD!”
Dex, better known as dexamethasone, is a steroid. Dave would have to take this on and off through his treatment regimens. It started out 4x a week and then eventually it became 1x a week. It would make him hyper and he would lose his voice. He became emotional and angry at the drop of hat over perceived wrongs that in reality didn’t exist. But we had prepared ourselves and did all we could to suck it up and let it go. It was not easy.
The Thalidomide made him tired and he would take it at night. The dex was like speed, so he would take it in the morning. Dave had a VGPR (Very Good Partial Response) on the Thalidomide/Dex within 30+ days of treatment starting. VGPR is one step below CR which is Complete Remission. Not a bad response at all. We were pleased.
Jul 22nd, 2009 by Lori Puente
Image via WikipediaWednesday, June 25, 2008
I made my first of many “narcotics runs” to the pharmacy. Each time the pharmacist would want to meet with me. Each time, I would explain that I understood that he had “other” narcotics and that we needed to be careful, and so on and so on. I had taken care of my mother in her last days, I was well aware of the need to be careful and understand what we were doing… self medicating. Sometimes I had a question, like how to wean him off one as I put him on another and so on. But for the most part it was just another thing I had to endure.
Jul 16th, 2009 by Lori Puente
Jul 16th, 2009 by Lori Puente
Normally, Montana is front and center. She is our second child and 2.5 years younger than Hudson. She wanted to help. Of course. She had a full time job as a pool manager and a summer diving coach. She was also still competing in the summer league (Montgomery County Diving League) with her last year of eligibility (and I missed THE WHOLE SEASON!). In addition to that, she was practicing with her coach, Anton Slobounov, at the University of Maryland. She is an organized, time manager kinda gal – clearly. She set about finding a place to live for her and her brother in the fall.
We each had a “job”, we were part of a team, a family, but we were each doing our task, very much alone, separate from each other, in solitude. We all stood tall, stayed focused, didn’t whine, didn’t demand of each other anything that wasn’t absolutely necessary. It was a time that is both extremely painful for me but also one where I am immensely proud. We sucked it up.
