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I cannot believe how many times I have wanted to sit behind my laptop and write. This blog began for me as a great way to share with friends and family on my progress, to reach out to those affected by Myeloma, and lastly if I am being completely honest, a free source of therapy for me. Yet time and time again I seem to find excuses for not writing. Some days while at the lake with my kids or while I am out watering my garden, thoughts and sometimes entire blog posts will enter my mind . Yet, I never take the time to write or type them. So lately I've questioned myself why I stopped. And I guess it's because writing for me has always been about being honest and open. And lately, that is becoming more and more difficult to do.
It easier to get up each day, and stay busy entertaining the kids, running errands, trying to keep up with the garden and lawn (which is pretty pathetic now thanks to the lack of rain), keeping up with my recent obsession with Pinterest and my new found love for restoring furniture, choosing new paint colors for every room in my house, and whatever else I keep my mind busy doing, than it is to stop and reflect about what is really going on with me.
I feel like lately I am stuck in a temporary in-between stage. Although I am considered "in remission", I am still on a maintenance regimen consisting of Revlimid and Dexamethasone 3 weeks out of every month, and I have monthly infusions, My hair is slowly growing out ( I can actually make a tiny ponytail), and I have regained some of the loss muscle and weight back. To most people I must look healthy and like life is back to normal. In fact, most people no longer ask how I am doing. Maybe they are afraid to ask, or just assume that is everything is fine. Honestly, it feels good to no longer receive the gloom and sad looks I was used to receiving a couple years ago as a sick cancer patient and mother of four young children.
So what's the problem? I know right? That is what I keep asking myself. Well, for those of us who read up on Myeloma daily, we know that this disease is still incurable. That it really does not go truly in remission. Up until a few years ago a 3 year life expectancy was the best one would have. Fortunately with Revimid patients are living longer. The goal is to keep it at bay for as long as possible with the hopes that when I do relapse, my body will respond to the therapy. And if it doesn't, hopefully a new treatment is available. Ultimately, however the Myeloma usually wins the battle. Daily, I Google Myeloma and read up on every little piece of new news that is published. Of course what also pops up are far too many obituaries of Myeloma patients who have lost their battle. I follow many blogs from Myeloma bloggers and although many of their stories inspire me, there are also several that write about their struggles with relapsing.
Although I try not to think about if and when I relapse, it of course enters my mind often especially during the late hours of the night. So although I am so very blessed to be "in remission", it is challenging at times knowing I have a ticking time bomb inside.
Running used to help me through some of those challenging moments. I felt strong running, almost invincible. Crossing the finish line at The Boston Marathon was so powerful. I had so many doubts in my mind, even putting aside the extreme of that heat that day. For well over 6 or 7 months I have watch my endurance decrease. My body screams at me when I have passed the threshold. Whether it is the long term effects from being on Revlimid or perhaps the disease itself, the bottom line, my body has changed. Lately I haven't even had the desire to get out there and run, let alone hit the gym. I know the endorphins I get from exercise help, and that my body needs to stay strong, so why aren't I out there doing it? At the same time, Mike is training for his first marathon this fall. This should also motivate me. But no. I am crazy proud of him, but I really don't feel the need or desire to join him. What the hell is wrong with me?
Sometimes I feel like the days pass and I can't feel passionate about much. Also as I mentioned, my energy has been pretty low as well. I know that a lot of that is side effects of the Revlimid and the lack of sleep due to the steroid and just being a busy mom. But I was desperate for some change.
A couple of months ago I talked with Dr. H about slowly coming off my anti-depressant. I had been on a couple different drugs since my diagnosis. I ended up staying on Effexor which also has an added benefit of helping out with the hot flashes from being put in menapause. But the past few months I realized more and more that I was beginning to feel like I was going through the motions in life. I don't ever really feel like I can be really happy or sad for that matter. Also my energy has felt like it has been zapped. So after reading up on all the different side effects of Effexor, I thought I would try coming off of it and see if I felt any different,
Well the first week pretty much sucked. My head was in a constant cloud. I had dizzy spells and felt like my brain was buzzing. I had a new found respect for anyone going through drug withdrawals. Day after day I waited for that to subside. It finally did after about 5 days. Then it was the tears. Once the floodgates were opened they just wouldn't stop. This was right around the same time of Marty's ride that I previously posted. It was such an inspirational day. It was a day full of emotion. When we got home that night from Maine, my son Mitch knocked at my bedroom door. He just looked at me with tears in his eyes and told me he was really sad. He said to me "I guess you are one of the few lucky ones who is living". Gulp! Yup, you try looking in your 11 year old son's eyes and come up with a quick response to that one. I just held him and cried and said "Yes I am".
Mike and I were up late that evening on the patio. Basically him trying to console me. As always he stayed strong and tried to pick up all the pieces to put me back together again.
From that teary moment there came many many more. In fact, I couldn't hide the tears from the kids. It reminded me so much of those first few weeks after I was diagnosed. One look at the kids and my eyes filled up. Wow maybe I really didn't need to be thrown into reality? Maybe it was good to be numb. Well after a few days of tears, I turned into bitchy mom who had no grip on life. My poor kids and Mike. I didn't even get like this when I was on the higher doses of Dex a couple of years ago.
To top it off we were heading to Maine to spend a week with our closest friends and their kids. There was going to be a total of 28 of us vacationing together for a week (divided in 4 homes). Although we vacationed together last year and had a blast, the thought of it sent me in complete panic mode. I have been isolating myself, avoiding big social scenes. I couldn't handle myself, let along 28 people .
I so much wanted to stay home and just send Mike with the kids. But deep down inside I told myself that I needed to go. What would happen if next year I was sick again and couldn't go? I knew how important it was to Mike and the kids. I couldn't let them down. I struggled for a couple of days, and then resorted to calling my doctor and getting back on my anti-depressant. We went to Maine and had a great week. The kids had a blast and I did have fun, especially on those fast tube rides. When I became too overwhelmed I would just tell everyone that I was tired and went to bed early. I am happy I decided to go, I wished that I could have enjoyed myself even more. I guess I did the best I could do.
Last week when I was in for my monthly infusion I sat with Dr. H and the nurses and opened up to them. They are so used to me coming in and seeing happy Jeanie telling them that everything was fine. Well that day they got an ear full. My favorite nurse Leslie held my hand, as her eyes filled with tears and told me that she expected this to happen. She went on to say that some cancer patients go to therapy when they are first diagnosed and work on the mental stuff as well as undergo all their treatment. Others like me, dive into beating down cancer with all of the chemo treatment and then expel their other energy keeping everything else in their life (ie: kids, house, marriage flowing). So now comes the mental baggage with being a cancer patient with an incurable cancer.
I had tried therapy when I was first diagnosed, but it really didn't do much for me. I am not sure if the therapist was the right fit or what. Or maybe it just wasn't my time. I don't view therapy as a sign of weakness. In fact, I find it to be a sign of strength. I know I can't carry on keeping myself busy, trying to avoid at all costs any down time. For me, the only down time I allow myself is at night. And I know how well that goes for me. Not! Hence the insomnia and my nightly dose of Ativan.
So in two days it will be my 42nd birthday. Cheers to me. A couple of years ago I never thought I would be here today. I have decided to give myself the gift of me. That means the good, the bad and the ugly. It is time for me to finally do the dirty work of digging deep and facing my fears. This time around, it is not training to complete a marathon, but rather, explore all the hidden crap of fear, sadness and anger. I am so so tired of this in-between life. For those of you who know me, but don't want to ask me how I'm doing. Now you know. Not so great. I struggle with this "new life" of being a survivor everyday. So please forgive me for putting up a wall around me and not staying in touch. I miss being engaged in life socially, trust me. But I guess until you walked in my shoes, you really don't know. There is no manual on how to get to try to get back that life you once had. I know that cancer will always be a part of me. I didn't ask for it, but it's here. I don't want it to define me, or limit me, more than it has to. It has sucked way too much out of me physically and emotionally and it is really starting to annoy me.
So stay tuned. I'm hoping to start shedding a little more light in my life.
For all my Myeloma friends, I usually I take my Revlimid and Dex in the morning. I held off and took them tonight. I'm hoping this means I'll be be able to actually get some sleep. We shall see!
Sweet Dreams-
Jeanie
13 Ekim 2012 Cumartesi
Can UAMS Total Therapy cure myeloma patients? Stay tuned!
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The controversial Myeloma Institute for Research Therapy (MIRT), part of the University of Arkansas Medical Sciences (UAMS) complex in Little Rock, has heated-up again. (They sure love acronyms in the medical field, don’t they? I have always preferred to use UAMS)
Several of our regular readers alerted me to a fascinating, long and winding thread that was developing on one of the Myeloma Beacon Forum sites.
You can find it by going to MyelomaBeacon.com, clicking on the “Forums” button at the top of the page and typing-in “Report on Myeloma Trials at UAMS.”
Apparently, the whole thing started when one of our most informed contributors, Mark, posted a study critical of UAMS:
An analysis of University of Arkansas Total Therapy Publications
I joined the party late. I believe my comment was 27th in line–although it sounds like the number started-out higher. Why were some comments removed? Attorneys representing UAMS and lead physician, Dr. “Bart” Barlogie, threatened legal action if some of the defamatory content wasn’t expunged.
You can’t make this stuff up!
What a perfect lead-in to the announcement that I will be hosting the next Myeloma Cure Panel discussion the evening of October 29th at 7 PM EST.
Several of my fellow myeloma bloggers, including Gary Petersen, UAMS and Total Therapy (TT) patient, Nick Van Dyk, and fellow Californian Jack Aiello will be joining me for a no-holds-barred, open and honest discussion about by far the biggest conflict/disagreement between myeloma specialists: Cure vs Control. Can multiple myeloma be cured?
I purposely chose not to invite a myeloma doc to join us on the 29th. I didn’t want political correctness to get in the way of our heartfelt patient’s perspective.
I will keep everyone updated about how this new age teleconference/online format works. Up to 50 callers can participate and ask questions of the panel. Or you will be able to email your questions in ahead of time.
Live listeners will be limited to the 50 mentioned above. But the real value is in the online recorded broadcast. Starting the next morning, you will be able to click-on a link so that you can listen to the discussion at your leisure.
CLICK HERE to view the promo poster for the event.
As a former Mayo Clinic Patient, I learned early-on to avoid discussing Total Therapy with UAMS patients and caregivers. For those of you that aren’t familiar with the politics, Mayo Clinic tends to be conservative when treating myeloma, while UAMS specialists tend to be far more aggressive. Anyway, things always seemed to get out-of-hand, resulting in pages and pages of stats and vitriol being exchanged that never seemed to really solve anything.
So I was surprised to learn that I would be moderating a panel set to discuss it all live! I wonder if there are going to be censors on hand in case the language gets a bit salty as things heat-up. It should be fun!
Feel good and keep smiling! Pat
Tips to help myeloma survivors keep their bodies strong (Part One)
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Thursday the Myeloma Beacon ran my monthly column, Pat’s Place, Fourteen Months and Still No Go! Here’s an excerpt:
I can remember hearing from other transplant recipients in past years, bemoaning the fact that they still weren’t “back to normal” months or more after their stem cell transplants.
I didn’t pay much attention at the time. But now I think I might understand how they felt. Like those I have heard from in the past, I am still not fully recovered from my transplant…
Yep. I tire more easily and recover more slowly now. I’m on a minimal 5 mg daily Revlimid dose and I receive a standard dose of sub-q Velcade once a week for four weeks, with four weeks off instead of two.
Prior to transplant I was taking 25 mg Revlimid (down to 15 mg toward the end of induction), Velcade once a week for a four weeks with only two weeks off in between cycles AND 40 mg dexamethasone each week.
AND I STILL FELT BETTER!
Later in the column, I explain how difficult it has been for me to build any significant muscle mass since I started using Revlimid over five years ago:
There’s more. I have been diligently trying to re-build some muscle following my transplant. Since I am living with residual bone damage, I can’t lift heavy weights. But some controlled movements are safe. For example, I can still do push-ups; I’m up to four sets of thirty.
But you wouldn’t know it by looking at me! I do squats using dumbbells, leg extensions, rowing, arm curls, and much more – all to no avail.
I met my wife when I hired her to manage a health club I had built in a small town back in the 1980s. I was a football coach for 10 years. My point: I know how resistance training should work. For example, even if you can’t do heavy lifting, multiple sets of push-ups should start to show in one’s chest and triceps, especially if you are consuming lots of extra protein like I am.
Is this a result of my transplant? Or does taking Revlimid – even at low doses – make it more difficult to build one’s body back-up? After all, my understanding is that Revlimid restricts our bodies’ ability to create small new blood vessels. While that’s a good thing when one is trying to starve new myeloma lesions, I’m guessing that Revlimid wouldn’t be a bodybuilder’s best friend…
I lost about 18 lbs in six weeks after I fractured a vertebra and was stuck in bed for several weeks–then became deathly ill while undergoing extensive radiation therapy at the same time I started using Rev and dex. No fun!
And in all this time, I have never been able to regain the much of the muscle mass I lost over those first six weeks. I drink a quality protein supplement and eat more meat than I probably should. It doesn’t help. Raw nuts? I eat them almost non-stop; grazing throughout the day.
Now don’t get me wrong. I can put on weight. But it tends to be fat and water. No muscle need apply!
If you would like to read more, you can find my column at Myeloma Beacon.com.
Today I spoke to a great group of patients and caregivers in Clearwater, Florida. Someone asked me:
“Pat, you recommend that we keep our bodies strong and healthy so we can withstand chemotherapy. Can you give us specifics about how to do that?”
Great question! At the time, I simply suggested a few websites where members of the group could find information about good nutrition, including Danny Parker’s column on this site. But now I realize that isn’t good enough. So I would like to give a more complete answer here tomorrow. Hope that he’s reading!
Until then, feel good and keep smiling! Pat
Patient Snapshot follow-up: Roz and her 14 year remission
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Yesterday I introduced you to long-lived myeloma survivor, Roz from Florida. I wrote how “she has four children, six grandchildren, and three great-grandchildren. Roz was diagnosed with both multiple myeloma and amyloidosis way back in 1997. To me, the fact that she’s still alive and well is inspirational!”
I added that Roz has been in remission for almost 14 years, without using maintenance therapy. That’s an exceptional response to what was an experimental procedure back in 1998.
So how did she and her doctors do it? What was it like to undergo such intensive, life-threatening therapy? Let’s let Roz tell us in her own words:
In 1997, I lived in the hills above Martinez, California, and worked in San Francisco as a legal secretary. I was very active – fitness walking (I gave up running due to bone spurs) and extensive bicycle riding. That Fall I noticed I was gradually feeling weaker and unable to complete my usual pace walking the hills. I didn’t see my doctor for a few months because I was scheduled for a physical in February. A few days after my physical, the doctor called me at work to inform me that I was severely anemic and would need more blood tests.
Since I have two siblings who had survived colon cancer, she thought I might have internal bleeding, so she sent me to a gastroenterologist, who performed a colonoscopy and an endoscopy, which was negative. I began seeing an oncologist who determined by May that I was in kidney failure. The nephrologist had no explanation for my kidney failure, and I continued on Epogen shots. Each of the specialists ran blood work each week, my blood pressure soared, and although I was following a renal diet, my potassium level was so high I needed medication (Kaexolate) weekly. By the end of 1997, I was in congestive heart failure, but the doctors didn’t recognize it until February 1998 when I finally had a chest x-ray.
A week after an emergency thoracentesis, the fluid returned, so I was hospitalized for a kidney biopsy, resulting in a diagnosis of amyloidosis. Although my oncologist insisted I didn’t have multiple myeloma, she finally performed a bone marrow biopsy, and I was indeed diagnosed with stage 3B cancer.
I returned to the hospital, John Muir in Walnut Creek, for “aggressive” chemo. I was given Vincristine, Adriamycin, and Decadron. Shortly after my release, I returned to the hospital with ileus (digestive paralysis), severe neuropathy, and lockjaw. After 10 days, the ileus resolved and I was released.
Within a couple weeks, I contracted bacterial pneumonia and was hospitalized for three weeks in the cardiac care unit. After two months’ recovery, I was given melphalan and prednisone in pill form to take at home. Also, I went to the hospital often for 10-hour immunogloulin infusions. Another bone marrow biopsy showed improvement, and by September I was on Interferon shots. This drug’s side effect was a nasty rash. Next, my new oncologist offered a bone marrow transplant.
My insurance company agreed, but insisted the transplant be done at Long Hospital, University of CA, San Francisco, due to their higher number of procedures. After many tests to determine my eligibility for transplant, I was given several Neupogen shots to increase my cell count, a high dose of Cytoxan (horrible side effects), and then spent two days collecting stem cells at the transplant hospital.
EDITORS NOTE: Autologous stem cell transplants were far more dangerous back in the 1990s than they are today. Statistics mimicked results from allogeneic (donor) transplants now.
My transplant experience was horrific. I had been warned that they didn’t expect me to survive, and I had read all the literature, but it was worse than I had expected. I was on oxygen from the first day. Many tests were done, such as arterial blood (several times), thorough heart and lung tests, but it wasn’t determined until after I was released that the drug Dapsone had altered my red cells and they were no longer carrying oxygen properly. I became “altered” due to urea on my brain and was put on continuous dialysis, suffered a heart attack, and spent 6 six days in ICU. Surprisingly, I survived and, although I was not able to eat yet, was sent home. My children were told that I wouldn’t live long.
I was beyond weak, continued to bleed, any attempt to consume food went immediately through or back up, and was taken to dialysis 3 times per week, where they informed me I would never get off dialysis. Three months later, my nephrologist took me off dialysis and my kidneys began to function. A month later I decided to sell my home in California and move to Florida to be near my daughter and grand kids, who had moved there the previous year. Although I was still very weak, my son drove me to Florida, over several days, and I’ve continued to live here ever since.
As soon as I was strong enough, I began walking to my mailbox, then walking to the stop sign, then walking down the block, etc. Eventually, I began playing piano for my neighbor, who taught Suzuki Strings. Next, I started singing, and subsequently playing piano, at church. Our choir director was also the chorus teacher at Springstead H.S., so I began playing for the chorus classes there also. Currently, I’m playing piano for chorus classes at Weeki Wachee H.S., Springstead H.S. occasionally, Chocachatti vioin classes, and occasionally playing at various church services.
I have four children, six grandchildren, and three great-grandchildren. I have had a total of five bone marrow biopsies, the last two after my transplant found no active myeloma. I’m sometimes a little anemic and other blood cells are often lower or higher than normal, but there has been no need for further treatment. I have had several illnesses, such as shingles, bronchitis, etc., but am remarkably healthy considering my condition prior and immediately following my transplant.
I have one word to describe your experience, Roz: AWESOME!
Here’s a timeline that Roz graciously put-together for us after I interviewed her. It breaks-down her difficult early years following her diagnosis:
2/1997 – physical, showing anemia
5/1997 – kidney failure
9/1997 – severe high blood pressure; lost vision in left eye due to burst retinal blood vessels
12/1997 – pleural effusions
2/1998 – kidney biopsy; diagnosis amyloidosis: 1st bone marrow biopsy; diagnosis multiple myeloma: VAD
3/1998 – ileus; bacterial pneumonia
5/1998 – melphalan, prednisone
7/1998 – 2nd bone marrow biopsy
8-9/1998 – Interferon
10/1998 – preparation for PBSCT
11/1998 – 3rd bone marrow biopsy showed myeloma at 25%; pheresis (stem cell collection)
12/1998 – transplant; dialysis; heart attack
2/1999 – 4th bone marrow biopsy, no detectable myeloma
3/1999 – return of kidney function
5/1999 – moved to FL
9/1999 – last bone marrow biopsy, no detectable myeloma
6/2001 – first normal hemoglobin count
Thanks, Roz! I’m looking forward to spending more time with you soon. So if any of you have questions for her, comment here or email me and I will pass the questions along.
Feel good and keep smiling! Pat
Flying keeps getting harder as my white counts crash
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Last night I participated in an amazing event: Boston’s Leukemia and Lymphoma Society (LLS) Light the Night fundraiser.
I’m not in a position to download my pictures until I return home, but the colorful images of tens of thousands brightly illuminated balloons will stick with me for a long time.
I would estimate at least 12,000 survivors, caregivers, their families and friends walked the mile-long route around the world famous Boston Commons. Many walked the route multiple times.
There were fun vendors. Corporate sponsored groups dressed in matching coats or sweatshirts, many honoring loved ones that had died. I was moved and honored to participate.
But getting here was a completely different story. I learned Wednesday that I had become neutropenic again. My neutrophil (mature white blood cell) count was down to 1.0–and dropping fast.
Not a total surprise, since I just completed my latest 21 day Revlimid cycle. And it seems to be Revlimid that continues to drag these counts down.
My medical oncologist, Dr. Malhotra, debated proceeding with my scheduled weekly Velcade sub-q injection. In the end, he and I decided that it was important not to skip a week. Knowing that I was traveling today, Dr. Malhotra insisted that I take along a syringe filled with neupogen so I could self-inject yesterday afternoon.
Of course I agreed, knowing we are fast approaching close to cold and flu season.
Considering the circumstances, I couldn’t have picked a worse day to travel. My flight from Tampa to Atlanta–and then from Atlanta to Boston–were both 100% full. And the Atlanta airport was packed! I now wear a mask whenever I fly. But this was the first time I ever felt compelled to wear my mask during a layover, too.
We were packed-in like sardines. And I just didn’t feel well.
But I made it to Boston in time to share a truly memorable evening. And that helped make my long travel day worthwhile.
Feel good and keep smiling! Pat
12 Ekim 2012 Cuma
I Had Fun Today
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I had a chance today to address employees of Celgene, makers of pomalidomide, the investigational drug that has kept my myeloma stable for more than four years now. I'm grateful for the drug, and told them so. They seemed pleased, and I had a lot of fun.
Celgene recently announced that they have submitted pomalidomide to the FDA for approval, see previous post. I will be delighted when the drug is accessible to even more people.
Celgene recently announced that they have submitted pomalidomide to the FDA for approval, see previous post. I will be delighted when the drug is accessible to even more people.
Cycle 54, Still Stable
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At the end of the 54th 28-day cycle on the pomalidomide study, I'm happy with the results once again. It's good stuff.
Cancer markers:
IgG is down slightly, from 1290 to 1210 mg/dL, but the difference may be within the measurement accuracy of the test. M-spike is unchanged at 1.1 g/dL. Lambda and kappa light chains did their usual dance, this time lambda chains are up slightly, but I doubt it means anything.
Every other blood marker of any significance was within the reference range, even the red blood cell count. I feel very good, too.
Anniversary:
Sunshine and I have recently begun the 50th year of our marriage. We're having a lot of fun running marathons in each of the 50 states, but 49 years of marriage is far more significant and satisfying.
Most-Recent Test Results:
Related Links:
Normal Breakfast:
Cancer markers:
IgG is down slightly, from 1290 to 1210 mg/dL, but the difference may be within the measurement accuracy of the test. M-spike is unchanged at 1.1 g/dL. Lambda and kappa light chains did their usual dance, this time lambda chains are up slightly, but I doubt it means anything.
Every other blood marker of any significance was within the reference range, even the red blood cell count. I feel very good, too.
Anniversary:
Sunshine and I have recently begun the 50th year of our marriage. We're having a lot of fun running marathons in each of the 50 states, but 49 years of marriage is far more significant and satisfying.
Most-Recent Test Results:
| Test | Feb 07 | Mar 08 | Apr 04 | May 04 | Remarks | |||||
| M-spike g/dL | 1.1 | 1.0 | 1.1 | 1.1 | \ Tumor marker | |||||
| IgG mg/dL | 1280 | 1100 | 1290 | 1210 | / Tumor marker | |||||
| Lambda mg/dL | 1.99 | 2.80 | 2.24 | 2.75 | L Free light chains | |||||
| Calcium mg/dL | 10.2 | 10.3 | 9.6 | 10.0 | Normal | |||||
| Creatinine mg/dL | 1.0 | 1.0 | 1.2 | 1.0 | Kidney, OK | |||||
| HGB g/dL | 15.2 | 14.2 | 14.6 | 15.6 | Hemoglobin, OK | |||||
| RBC M/uL | 4.18 | 3.86 | 4.08 | 4.31 | Red cells, not bad | |||||
| WBC K/uL | 4.5 | 3.7 | 6.1 | 5.3 | White cells, normal | |||||
| ANC K/uL | 2.40 | 1.70 | 1.50 | 2.70 | Neutrophils, normal |
Related Links:
| My Myeloma | A discussion of my myeloma, not very technical. | |
| My Treatment History | Not technical. | |
| My Test Charts | Graphic displays of several key test results over time. | |
| My Test Result Table | Somewhat technical. Best with a wide browser window. | |
| My Supplement Regimen | With links to where I buy them. |
Normal Breakfast:
Another Special Mother's Day
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It's been way too long since I last posted a blog. Life has gotten busy! Which is a good thing. Most of our free time these days are spent on the soccer and baseball fields. I feel like I am being pulled in a million different directions. Every night I plan on sitting down to write, but usually collapse on the couch and fall asleep!
Well, tomorrow is the big day. Mike and I are competing in a Mother's Day Sprint Triathlon in Sudbury, MA! Before I went into the hospital in November before my transplant, Mike wanted to make sure that we both had something BIG to look forward to and to strive for. So he registered us for the triathlon. I had participated in it last year. Swimming is definitely not my strength but the race itself was so exhilarating. Just being surrounded by so many people (of all shapes and sizes) all participating in the same event. It is amazing to be there and especially to be a part of something so great. For so many it has been a fitness goal or on their bucket list, for others, it is a training triathlon for a bigger race in the future. I can remember last year Mike telling me that he had no desire to do one. And now today, he has gotten in the best shape of his life, he has become a great runner and he has been swimming for the last 12 weeks. I am so proud of him. I know initially he signed up for me, but you know what, he really is excited about doing it!
I have not physically trained for this race all that much. Although my running is stronger than ever, Thursday was my first time in the pool since last year. I managed to swim the 16 laps necessary for tomorrow. It is not pretty and not fast, but I can get from point A to point B. Yesterday Mike, my friend Shayna and I did a brick. We did a 9 1/2 mile ride followed by a 2 1/2 mile run. I forgot how challenging the transition is from riding to running. My legs felt like tree trunks!
It's funny I can feel the anxiety from many of my friends doing the race tomorrow. And all of them have been training for it. I am probably the one who is least prepared for it! Yet I am so excited to do it. You see, it is coming up on my one year anniversary since I was diagnosed with Multiple Myeloma. Last year at this time I was still struggling with a healing sternum and I had a strange bump on my chest which was later confirmed to be a plasmacytoma. I can remember swimming in the last triathlon and struggling with the pain in my sternum. Little did I know what was really going on with me. The fact that it is one year later, a stem cell transplant later..... I can't freaking believe it!! In the last year I have felt so close to death. I honestly was doubting whether or not I was going to make it to see my kids begin school last September, let alone be running again or participating in a Triathlon!
As I explained to Mike on the soccer field this morning, I feel like I need to pinch myself everyday. I feel so happy and so incredibly blessed for how my life is today. It's funny so many people tell me that I should move on. That last year was last year and this is now. But you know what? Every day I do reflect about the past year. But I also think of where I am today. I feel stronger than ever. In fact I am up to running 10 miles! I think reflecting on the last year helps me really appreciate today and how lucky I feel and how happy I am. As we all know today is all we have. Life can change on a dime as I have experienced firsthand. So everyday I feel great, I get out there and run and enjoy it fully. I beat this cancer this time and I only plan on getting stronger from this point. So when it tries to attack again I'm ready to put up a good fight!
As I was running the other day, reflecting on all that has happened, a special person came to mind, Kathy Giusti, Multiple Myeloma Survivor and founder of the Multiple Myeloma Research Foundation, MMRF. Kathy was diagnosed in 1996 and at the time was told that she only had 3 years to live. Today she is still in a "Complete Response". I am so grateful for all of her efforts with the MMRF. The MMRF has played such a big role in bringing four new treatments for myeloma in the past four years. These treatments, now the standard of care for multiple myeloma patients have helped to almost double the life expectancy among some patients. Kathy Giusti was just recently named one of Time Magazine World's 100 Most Influential People. Tomorrow I am dedicating my race to Kathy Giusti. I feel strongly that I am here today largely because of her efforts. It is my way of thanking her for all that she has done for the Multiple Myeloma World. Her strength and perseverance to be there for her daughters, her refusal to give up hope, and her dedication to finding a cure, has truly been such an inspiration for me. So on this Mother's Day, I will be thinking of one very special woman. Kathy, as I am struggling in the pool swimming my last lap, pedaling to the transition area, and running to the finish line, I will be thinking of you!
Happy Mother's Day to all the mom's out there. To my mom, I love you and miss you so much and I am counting the days until you and dad come out to visit!
Love-Jeanie
Well, tomorrow is the big day. Mike and I are competing in a Mother's Day Sprint Triathlon in Sudbury, MA! Before I went into the hospital in November before my transplant, Mike wanted to make sure that we both had something BIG to look forward to and to strive for. So he registered us for the triathlon. I had participated in it last year. Swimming is definitely not my strength but the race itself was so exhilarating. Just being surrounded by so many people (of all shapes and sizes) all participating in the same event. It is amazing to be there and especially to be a part of something so great. For so many it has been a fitness goal or on their bucket list, for others, it is a training triathlon for a bigger race in the future. I can remember last year Mike telling me that he had no desire to do one. And now today, he has gotten in the best shape of his life, he has become a great runner and he has been swimming for the last 12 weeks. I am so proud of him. I know initially he signed up for me, but you know what, he really is excited about doing it!
I have not physically trained for this race all that much. Although my running is stronger than ever, Thursday was my first time in the pool since last year. I managed to swim the 16 laps necessary for tomorrow. It is not pretty and not fast, but I can get from point A to point B. Yesterday Mike, my friend Shayna and I did a brick. We did a 9 1/2 mile ride followed by a 2 1/2 mile run. I forgot how challenging the transition is from riding to running. My legs felt like tree trunks!
It's funny I can feel the anxiety from many of my friends doing the race tomorrow. And all of them have been training for it. I am probably the one who is least prepared for it! Yet I am so excited to do it. You see, it is coming up on my one year anniversary since I was diagnosed with Multiple Myeloma. Last year at this time I was still struggling with a healing sternum and I had a strange bump on my chest which was later confirmed to be a plasmacytoma. I can remember swimming in the last triathlon and struggling with the pain in my sternum. Little did I know what was really going on with me. The fact that it is one year later, a stem cell transplant later..... I can't freaking believe it!! In the last year I have felt so close to death. I honestly was doubting whether or not I was going to make it to see my kids begin school last September, let alone be running again or participating in a Triathlon!
As I explained to Mike on the soccer field this morning, I feel like I need to pinch myself everyday. I feel so happy and so incredibly blessed for how my life is today. It's funny so many people tell me that I should move on. That last year was last year and this is now. But you know what? Every day I do reflect about the past year. But I also think of where I am today. I feel stronger than ever. In fact I am up to running 10 miles! I think reflecting on the last year helps me really appreciate today and how lucky I feel and how happy I am. As we all know today is all we have. Life can change on a dime as I have experienced firsthand. So everyday I feel great, I get out there and run and enjoy it fully. I beat this cancer this time and I only plan on getting stronger from this point. So when it tries to attack again I'm ready to put up a good fight!
As I was running the other day, reflecting on all that has happened, a special person came to mind, Kathy Giusti, Multiple Myeloma Survivor and founder of the Multiple Myeloma Research Foundation, MMRF. Kathy was diagnosed in 1996 and at the time was told that she only had 3 years to live. Today she is still in a "Complete Response". I am so grateful for all of her efforts with the MMRF. The MMRF has played such a big role in bringing four new treatments for myeloma in the past four years. These treatments, now the standard of care for multiple myeloma patients have helped to almost double the life expectancy among some patients. Kathy Giusti was just recently named one of Time Magazine World's 100 Most Influential People. Tomorrow I am dedicating my race to Kathy Giusti. I feel strongly that I am here today largely because of her efforts. It is my way of thanking her for all that she has done for the Multiple Myeloma World. Her strength and perseverance to be there for her daughters, her refusal to give up hope, and her dedication to finding a cure, has truly been such an inspiration for me. So on this Mother's Day, I will be thinking of one very special woman. Kathy, as I am struggling in the pool swimming my last lap, pedaling to the transition area, and running to the finish line, I will be thinking of you!
Happy Mother's Day to all the mom's out there. To my mom, I love you and miss you so much and I am counting the days until you and dad come out to visit!
Love-Jeanie
Let's Hear It For Marty And His Cure For Cancer Tour!
To contact us Click HERE
Tomorrow morning we will be all leaving the house early to cheer on Marty Perlmutter who has traveled on a 1,400 bike journey from Jacksonville, Florida to York, Maine. He is riding to honor his best friend, Roy Gross, who lost his battle with Multiple Myeloma in March, 2012. Marty has set a goal to raise $20,000 for the Multiple Myeloma Research Foundation.
Marty is staying in Nashua, NH tonight after traveling 100 long hot miles today. Tomorrow morning my husband Mike will be joining Marty, as he completes his journey to Maine. Mike was so inspired by Marty and asked if he could join him for a few miles. During the last couple of years, Mike has taken up cycling. He has participated in several sprint triathlons and charity rides. After talking with him, Mike convinced himself to ride the 80 plus miles with Marty tomorrow. This will be Mike's longest ride to date. I am so overwhelmed with love and pride for my Mikey. There truly exists nothing that man will not do to support me. As I sit to write this blog, my eyes are filled with tears. He is the hardest working man I know, yet he always makes his family a priority in his life. And now he is going above and beyond riding along with Marty supporting the fight against Multiple Myeloma. Everyday Mike shows me how determined he is to support me in every way to continue to fight this crappy disease that robs the lives of so many people everyday, like Marty's best friend Roy. I don't know how I got so lucky that June '92 back in UNH! Mikey, you are my one and only one and you continue to give me butterflies everyday!
I will be sure to take lots of photos tomorrow. The kids have packed up our cow bells, pom poms and signs. We will all be leaving early tomorrow morning to give them a fun send off as they hit the pavement. Of course, then the kids and I will go home and chill for about 4 hours and we will travel to York to see them get to the finish line at the beautiful Nubble Light in York, Maine!s
If you would like to view Marty's blog please click on the link below:
2012rideforcancer.blogspot.com
Also Marty's web page for donations is:
www.active.com/donate/2012mmrfYor/MartyCure
Tomorrow morning we will be all leaving the house early to cheer on Marty Perlmutter who has traveled on a 1,400 bike journey from Jacksonville, Florida to York, Maine. He is riding to honor his best friend, Roy Gross, who lost his battle with Multiple Myeloma in March, 2012. Marty has set a goal to raise $20,000 for the Multiple Myeloma Research Foundation.
Marty is staying in Nashua, NH tonight after traveling 100 long hot miles today. Tomorrow morning my husband Mike will be joining Marty, as he completes his journey to Maine. Mike was so inspired by Marty and asked if he could join him for a few miles. During the last couple of years, Mike has taken up cycling. He has participated in several sprint triathlons and charity rides. After talking with him, Mike convinced himself to ride the 80 plus miles with Marty tomorrow. This will be Mike's longest ride to date. I am so overwhelmed with love and pride for my Mikey. There truly exists nothing that man will not do to support me. As I sit to write this blog, my eyes are filled with tears. He is the hardest working man I know, yet he always makes his family a priority in his life. And now he is going above and beyond riding along with Marty supporting the fight against Multiple Myeloma. Everyday Mike shows me how determined he is to support me in every way to continue to fight this crappy disease that robs the lives of so many people everyday, like Marty's best friend Roy. I don't know how I got so lucky that June '92 back in UNH! Mikey, you are my one and only one and you continue to give me butterflies everyday!
I will be sure to take lots of photos tomorrow. The kids have packed up our cow bells, pom poms and signs. We will all be leaving early tomorrow morning to give them a fun send off as they hit the pavement. Of course, then the kids and I will go home and chill for about 4 hours and we will travel to York to see them get to the finish line at the beautiful Nubble Light in York, Maine!s
If you would like to view Marty's blog please click on the link below:
2012rideforcancer.blogspot.com
Also Marty's web page for donations is:
www.active.com/donate/2012mmrfYor/MartyCure
I'm In Remission, So What's Wrong?
To contact us Click HERE
I cannot believe how many times I have wanted to sit behind my laptop and write. This blog began for me as a great way to share with friends and family on my progress, to reach out to those affected by Myeloma, and lastly if I am being completely honest, a free source of therapy for me. Yet time and time again I seem to find excuses for not writing. Some days while at the lake with my kids or while I am out watering my garden, thoughts and sometimes entire blog posts will enter my mind . Yet, I never take the time to write or type them. So lately I've questioned myself why I stopped. And I guess it's because writing for me has always been about being honest and open. And lately, that is becoming more and more difficult to do.
It easier to get up each day, and stay busy entertaining the kids, running errands, trying to keep up with the garden and lawn (which is pretty pathetic now thanks to the lack of rain), keeping up with my recent obsession with Pinterest and my new found love for restoring furniture, choosing new paint colors for every room in my house, and whatever else I keep my mind busy doing, than it is to stop and reflect about what is really going on with me.
I feel like lately I am stuck in a temporary in-between stage. Although I am considered "in remission", I am still on a maintenance regimen consisting of Revlimid and Dexamethasone 3 weeks out of every month, and I have monthly infusions, My hair is slowly growing out ( I can actually make a tiny ponytail), and I have regained some of the loss muscle and weight back. To most people I must look healthy and like life is back to normal. In fact, most people no longer ask how I am doing. Maybe they are afraid to ask, or just assume that is everything is fine. Honestly, it feels good to no longer receive the gloom and sad looks I was used to receiving a couple years ago as a sick cancer patient and mother of four young children.
So what's the problem? I know right? That is what I keep asking myself. Well, for those of us who read up on Myeloma daily, we know that this disease is still incurable. That it really does not go truly in remission. Up until a few years ago a 3 year life expectancy was the best one would have. Fortunately with Revimid patients are living longer. The goal is to keep it at bay for as long as possible with the hopes that when I do relapse, my body will respond to the therapy. And if it doesn't, hopefully a new treatment is available. Ultimately, however the Myeloma usually wins the battle. Daily, I Google Myeloma and read up on every little piece of new news that is published. Of course what also pops up are far too many obituaries of Myeloma patients who have lost their battle. I follow many blogs from Myeloma bloggers and although many of their stories inspire me, there are also several that write about their struggles with relapsing.
Although I try not to think about if and when I relapse, it of course enters my mind often especially during the late hours of the night. So although I am so very blessed to be "in remission", it is challenging at times knowing I have a ticking time bomb inside.
Running used to help me through some of those challenging moments. I felt strong running, almost invincible. Crossing the finish line at The Boston Marathon was so powerful. I had so many doubts in my mind, even putting aside the extreme of that heat that day. For well over 6 or 7 months I have watch my endurance decrease. My body screams at me when I have passed the threshold. Whether it is the long term effects from being on Revlimid or perhaps the disease itself, the bottom line, my body has changed. Lately I haven't even had the desire to get out there and run, let alone hit the gym. I know the endorphins I get from exercise help, and that my body needs to stay strong, so why aren't I out there doing it? At the same time, Mike is training for his first marathon this fall. This should also motivate me. But no. I am crazy proud of him, but I really don't feel the need or desire to join him. What the hell is wrong with me?
Sometimes I feel like the days pass and I can't feel passionate about much. Also as I mentioned, my energy has been pretty low as well. I know that a lot of that is side effects of the Revlimid and the lack of sleep due to the steroid and just being a busy mom. But I was desperate for some change.
A couple of months ago I talked with Dr. H about slowly coming off my anti-depressant. I had been on a couple different drugs since my diagnosis. I ended up staying on Effexor which also has an added benefit of helping out with the hot flashes from being put in menapause. But the past few months I realized more and more that I was beginning to feel like I was going through the motions in life. I don't ever really feel like I can be really happy or sad for that matter. Also my energy has felt like it has been zapped. So after reading up on all the different side effects of Effexor, I thought I would try coming off of it and see if I felt any different,
Well the first week pretty much sucked. My head was in a constant cloud. I had dizzy spells and felt like my brain was buzzing. I had a new found respect for anyone going through drug withdrawals. Day after day I waited for that to subside. It finally did after about 5 days. Then it was the tears. Once the floodgates were opened they just wouldn't stop. This was right around the same time of Marty's ride that I previously posted. It was such an inspirational day. It was a day full of emotion. When we got home that night from Maine, my son Mitch knocked at my bedroom door. He just looked at me with tears in his eyes and told me he was really sad. He said to me "I guess you are one of the few lucky ones who is living". Gulp! Yup, you try looking in your 11 year old son's eyes and come up with a quick response to that one. I just held him and cried and said "Yes I am".
Mike and I were up late that evening on the patio. Basically him trying to console me. As always he stayed strong and tried to pick up all the pieces to put me back together again.
From that teary moment there came many many more. In fact, I couldn't hide the tears from the kids. It reminded me so much of those first few weeks after I was diagnosed. One look at the kids and my eyes filled up. Wow maybe I really didn't need to be thrown into reality? Maybe it was good to be numb. Well after a few days of tears, I turned into bitchy mom who had no grip on life. My poor kids and Mike. I didn't even get like this when I was on the higher doses of Dex a couple of years ago.
To top it off we were heading to Maine to spend a week with our closest friends and their kids. There was going to be a total of 28 of us vacationing together for a week (divided in 4 homes). Although we vacationed together last year and had a blast, the thought of it sent me in complete panic mode. I have been isolating myself, avoiding big social scenes. I couldn't handle myself, let along 28 people .
I so much wanted to stay home and just send Mike with the kids. But deep down inside I told myself that I needed to go. What would happen if next year I was sick again and couldn't go? I knew how important it was to Mike and the kids. I couldn't let them down. I struggled for a couple of days, and then resorted to calling my doctor and getting back on my anti-depressant. We went to Maine and had a great week. The kids had a blast and I did have fun, especially on those fast tube rides. When I became too overwhelmed I would just tell everyone that I was tired and went to bed early. I am happy I decided to go, I wished that I could have enjoyed myself even more. I guess I did the best I could do.
Last week when I was in for my monthly infusion I sat with Dr. H and the nurses and opened up to them. They are so used to me coming in and seeing happy Jeanie telling them that everything was fine. Well that day they got an ear full. My favorite nurse Leslie held my hand, as her eyes filled with tears and told me that she expected this to happen. She went on to say that some cancer patients go to therapy when they are first diagnosed and work on the mental stuff as well as undergo all their treatment. Others like me, dive into beating down cancer with all of the chemo treatment and then expel their other energy keeping everything else in their life (ie: kids, house, marriage flowing). So now comes the mental baggage with being a cancer patient with an incurable cancer.
I had tried therapy when I was first diagnosed, but it really didn't do much for me. I am not sure if the therapist was the right fit or what. Or maybe it just wasn't my time. I don't view therapy as a sign of weakness. In fact, I find it to be a sign of strength. I know I can't carry on keeping myself busy, trying to avoid at all costs any down time. For me, the only down time I allow myself is at night. And I know how well that goes for me. Not! Hence the insomnia and my nightly dose of Ativan.
So in two days it will be my 42nd birthday. Cheers to me. A couple of years ago I never thought I would be here today. I have decided to give myself the gift of me. That means the good, the bad and the ugly. It is time for me to finally do the dirty work of digging deep and facing my fears. This time around, it is not training to complete a marathon, but rather, explore all the hidden crap of fear, sadness and anger. I am so so tired of this in-between life. For those of you who know me, but don't want to ask me how I'm doing. Now you know. Not so great. I struggle with this "new life" of being a survivor everyday. So please forgive me for putting up a wall around me and not staying in touch. I miss being engaged in life socially, trust me. But I guess until you walked in my shoes, you really don't know. There is no manual on how to get to try to get back that life you once had. I know that cancer will always be a part of me. I didn't ask for it, but it's here. I don't want it to define me, or limit me, more than it has to. It has sucked way too much out of me physically and emotionally and it is really starting to annoy me.
So stay tuned. I'm hoping to start shedding a little more light in my life.
For all my Myeloma friends, I usually I take my Revlimid and Dex in the morning. I held off and took them tonight. I'm hoping this means I'll be be able to actually get some sleep. We shall see!
Sweet Dreams-
Jeanie
It easier to get up each day, and stay busy entertaining the kids, running errands, trying to keep up with the garden and lawn (which is pretty pathetic now thanks to the lack of rain), keeping up with my recent obsession with Pinterest and my new found love for restoring furniture, choosing new paint colors for every room in my house, and whatever else I keep my mind busy doing, than it is to stop and reflect about what is really going on with me.
I feel like lately I am stuck in a temporary in-between stage. Although I am considered "in remission", I am still on a maintenance regimen consisting of Revlimid and Dexamethasone 3 weeks out of every month, and I have monthly infusions, My hair is slowly growing out ( I can actually make a tiny ponytail), and I have regained some of the loss muscle and weight back. To most people I must look healthy and like life is back to normal. In fact, most people no longer ask how I am doing. Maybe they are afraid to ask, or just assume that is everything is fine. Honestly, it feels good to no longer receive the gloom and sad looks I was used to receiving a couple years ago as a sick cancer patient and mother of four young children.
So what's the problem? I know right? That is what I keep asking myself. Well, for those of us who read up on Myeloma daily, we know that this disease is still incurable. That it really does not go truly in remission. Up until a few years ago a 3 year life expectancy was the best one would have. Fortunately with Revimid patients are living longer. The goal is to keep it at bay for as long as possible with the hopes that when I do relapse, my body will respond to the therapy. And if it doesn't, hopefully a new treatment is available. Ultimately, however the Myeloma usually wins the battle. Daily, I Google Myeloma and read up on every little piece of new news that is published. Of course what also pops up are far too many obituaries of Myeloma patients who have lost their battle. I follow many blogs from Myeloma bloggers and although many of their stories inspire me, there are also several that write about their struggles with relapsing.
Although I try not to think about if and when I relapse, it of course enters my mind often especially during the late hours of the night. So although I am so very blessed to be "in remission", it is challenging at times knowing I have a ticking time bomb inside.
Running used to help me through some of those challenging moments. I felt strong running, almost invincible. Crossing the finish line at The Boston Marathon was so powerful. I had so many doubts in my mind, even putting aside the extreme of that heat that day. For well over 6 or 7 months I have watch my endurance decrease. My body screams at me when I have passed the threshold. Whether it is the long term effects from being on Revlimid or perhaps the disease itself, the bottom line, my body has changed. Lately I haven't even had the desire to get out there and run, let alone hit the gym. I know the endorphins I get from exercise help, and that my body needs to stay strong, so why aren't I out there doing it? At the same time, Mike is training for his first marathon this fall. This should also motivate me. But no. I am crazy proud of him, but I really don't feel the need or desire to join him. What the hell is wrong with me?
Sometimes I feel like the days pass and I can't feel passionate about much. Also as I mentioned, my energy has been pretty low as well. I know that a lot of that is side effects of the Revlimid and the lack of sleep due to the steroid and just being a busy mom. But I was desperate for some change.
A couple of months ago I talked with Dr. H about slowly coming off my anti-depressant. I had been on a couple different drugs since my diagnosis. I ended up staying on Effexor which also has an added benefit of helping out with the hot flashes from being put in menapause. But the past few months I realized more and more that I was beginning to feel like I was going through the motions in life. I don't ever really feel like I can be really happy or sad for that matter. Also my energy has felt like it has been zapped. So after reading up on all the different side effects of Effexor, I thought I would try coming off of it and see if I felt any different,
Well the first week pretty much sucked. My head was in a constant cloud. I had dizzy spells and felt like my brain was buzzing. I had a new found respect for anyone going through drug withdrawals. Day after day I waited for that to subside. It finally did after about 5 days. Then it was the tears. Once the floodgates were opened they just wouldn't stop. This was right around the same time of Marty's ride that I previously posted. It was such an inspirational day. It was a day full of emotion. When we got home that night from Maine, my son Mitch knocked at my bedroom door. He just looked at me with tears in his eyes and told me he was really sad. He said to me "I guess you are one of the few lucky ones who is living". Gulp! Yup, you try looking in your 11 year old son's eyes and come up with a quick response to that one. I just held him and cried and said "Yes I am".
Mike and I were up late that evening on the patio. Basically him trying to console me. As always he stayed strong and tried to pick up all the pieces to put me back together again.
From that teary moment there came many many more. In fact, I couldn't hide the tears from the kids. It reminded me so much of those first few weeks after I was diagnosed. One look at the kids and my eyes filled up. Wow maybe I really didn't need to be thrown into reality? Maybe it was good to be numb. Well after a few days of tears, I turned into bitchy mom who had no grip on life. My poor kids and Mike. I didn't even get like this when I was on the higher doses of Dex a couple of years ago.
To top it off we were heading to Maine to spend a week with our closest friends and their kids. There was going to be a total of 28 of us vacationing together for a week (divided in 4 homes). Although we vacationed together last year and had a blast, the thought of it sent me in complete panic mode. I have been isolating myself, avoiding big social scenes. I couldn't handle myself, let along 28 people .
I so much wanted to stay home and just send Mike with the kids. But deep down inside I told myself that I needed to go. What would happen if next year I was sick again and couldn't go? I knew how important it was to Mike and the kids. I couldn't let them down. I struggled for a couple of days, and then resorted to calling my doctor and getting back on my anti-depressant. We went to Maine and had a great week. The kids had a blast and I did have fun, especially on those fast tube rides. When I became too overwhelmed I would just tell everyone that I was tired and went to bed early. I am happy I decided to go, I wished that I could have enjoyed myself even more. I guess I did the best I could do.
Last week when I was in for my monthly infusion I sat with Dr. H and the nurses and opened up to them. They are so used to me coming in and seeing happy Jeanie telling them that everything was fine. Well that day they got an ear full. My favorite nurse Leslie held my hand, as her eyes filled with tears and told me that she expected this to happen. She went on to say that some cancer patients go to therapy when they are first diagnosed and work on the mental stuff as well as undergo all their treatment. Others like me, dive into beating down cancer with all of the chemo treatment and then expel their other energy keeping everything else in their life (ie: kids, house, marriage flowing). So now comes the mental baggage with being a cancer patient with an incurable cancer.
I had tried therapy when I was first diagnosed, but it really didn't do much for me. I am not sure if the therapist was the right fit or what. Or maybe it just wasn't my time. I don't view therapy as a sign of weakness. In fact, I find it to be a sign of strength. I know I can't carry on keeping myself busy, trying to avoid at all costs any down time. For me, the only down time I allow myself is at night. And I know how well that goes for me. Not! Hence the insomnia and my nightly dose of Ativan.
So in two days it will be my 42nd birthday. Cheers to me. A couple of years ago I never thought I would be here today. I have decided to give myself the gift of me. That means the good, the bad and the ugly. It is time for me to finally do the dirty work of digging deep and facing my fears. This time around, it is not training to complete a marathon, but rather, explore all the hidden crap of fear, sadness and anger. I am so so tired of this in-between life. For those of you who know me, but don't want to ask me how I'm doing. Now you know. Not so great. I struggle with this "new life" of being a survivor everyday. So please forgive me for putting up a wall around me and not staying in touch. I miss being engaged in life socially, trust me. But I guess until you walked in my shoes, you really don't know. There is no manual on how to get to try to get back that life you once had. I know that cancer will always be a part of me. I didn't ask for it, but it's here. I don't want it to define me, or limit me, more than it has to. It has sucked way too much out of me physically and emotionally and it is really starting to annoy me.
So stay tuned. I'm hoping to start shedding a little more light in my life.
For all my Myeloma friends, I usually I take my Revlimid and Dex in the morning. I held off and took them tonight. I'm hoping this means I'll be be able to actually get some sleep. We shall see!
Sweet Dreams-
Jeanie
11 Ekim 2012 Perşembe
Tips to help myeloma survivors keep their bodies strong (Part Two)
To contact us Click HERE
To review, my premise is that myeloma patients should eat exceptionally well and exercise regularly, not so much to fight our cancer, but to keep our bodies strong enough to withstand the continual assault of induction, stem cell transplant(s), consolidation and ongoing maintenance therapy that’s necessary to keep us alive.
I closed yesterday’s post this way:
Today I spoke to a great group of patients and caregivers in Clearwater, Florida. Someone asked me:
“Pat, you recommend that we keep our bodies strong and healthy so we can withstand chemotherapy. Can you give us specifics about how to do that?”
Great question! At the time, I simply suggested a few websites where members of the group could find information about good nutrition, including Danny Parker’s column on this site. But now I realize that isn’t good enough. So I would like to give a more complete answer here tomorrow. Hope that he’s reading!
Until then, feel good and keep smiling! Pat
So let’s dive-right-in.
Unlike our good friend, Danny, I’m not going to take the time to provide you with a lot of links and site my work. Instead, I would like to share 15 nutritional rules l try and follow to help keep my body strong and moving.
Although many nutritionists that specialize in anti-cancer nutrition encourage eating a vegetarian diet, that may not be the best route to go for a myeloma patient.
I was a vegetarian for over a decade before my diagnosis. But after I began treatment, I sought advice from a well known natureopathic M.D. in the Twin Cities. She advised to I eat red meat (free-range beef or bison) three times a week–and add liver to my diet twice a week.
The reason: To try and provide my bone marrow with the protein and nutrients it needs to recover quickly following chemotherapy.
I never did eat that much red meat or liver. But the principle seems to be a good one.
Here are 15 nutritional guidelines I’m following now:
2) Add natural antioxidants like oregano, parsley and basil, and use olive oil when I cook
3) Eat a lot of fresh or frozen berries
4) Substitute spinach and kale for iceberg lettuce
5) Make a special effort to eat brightly colored peppers; they are full of antioxidants
6) Mushrooms are great for your immune system. I try and eat a wide variety of different types
7) Snack on raw nuts constantly. You can find a great walnut, almond, cashew, hazelnut and pistachio mix at Target. Have you ever wondered why raw nuts cost more than roasted? The raw mix costs $2 more than the same size container of roasted!
8) Milled flax seed is an inexpensive nutritional powerhouse! I add it to all of my smoothies and sprinkle it on my high protein, low carb cereal mix
9) Yes, I try and avoid sugar. AND IT ISN’T EASY!
10) Supplement my diet daily by drinking a nutritionally enhanced protein drink
11) I do eat meat most days, the leaner the better! That may include beef, bison, turkey, chicken and/or fish
12) Avoid processed flour. That means most commercially made bread and other baked goods
13) I try and buy organic meat and vegetables, but I’m not obsessed with it. When shopping, I place freshness and a dark, healthy color over buying organics for organics sake
14) Substitute soy milk for regular milk whenever possible, and start most mornings with 2 brown eggs. A great source of protein and low cal, too!
15) One of my most important goals: Eat 10-12 servings of vegetables each and every day
This may seem like a long list, but I’ve internalized it and don’t really give these things a second thought. Eating healthy is a habit. And I’m pretty good about following these nutritional guidelines.
I think they help me keep my body healthy and strong–considering the perpetual pounding it takes from ongoing chemotherapy. Maybe adding a few of these suggestions to your diet can help you, too!
Feel good and keep smiling! Pat
Stress re-visited
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Last week I wrote a post about stress:
Fact or fiction: Stress causes cancer
I opened by asking these questions:
Can stress cause cancer? Does chronic stress allow cancer to regain a foothold in patients who have already achieved remission? And/or does it reduce the effectiveness of anti-cancer therapies? Conversely, does living a relatively stress-free life help cancer patients live longer?
I then explained that trying to find answers was going to be an ongoing project, because the research isn’t as clear-cut as one might think.
We have heard it so often, I’m thinking that most of us have come to accept it as fact; stress causes cancer.
Well, I’m not sure it is. A fact, I mean.
So I asked my readers (YOU!) to keep your eyes open and let me know if you find any compelling evidence, one way or the other. Are you interested in the potential benefits of meditation? Or is drinking heavily and/or taking extra Ativan enough? (Just checking to see if you’re paying attention!)
Well, I re-visited my post and noticed that no one had commented. No interest in this topic? My ongoing “positive attitude quest” generated more comments:
Does a positive attitude really help myeloma patients live longer? YES!
YOUR MISSION: Help me start a “positive posse!”
Does attitude affect overall survival of cancer patients?
Personally, I think dealing with stress in a healthy way may be even more important than maintaining a positive attitude–or maybe the two are connected?
Please let me know what you think. There is so much to investigate–and only so many hours in a day. I would like to work-on what my readers think is important.
Feel good and keep smiling! Pat
Amyloidosis update. And “Patient Snapshot” feature starts tomorrow!
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I would like to introduce an ongoing new series of posts, focusing on interesting and inspiring patient stories. I started doing this a while back, but lost focus and stopped featuring your stories regularly. That was a mistake!
I have run into so many interesting survivors as I travel around the country. So many that I have started interviewing them and asking if they would pass-along details about their myeloma journeys for me to post.
I am now sitting on a half dozen or more of these patient “snapshots.” I will start running them tomorrow. But before I do, I wanted to share more about myeloma’s close cousin, amyloidosis.
First, I wasn’t aware that long term dialysis–especially hemodialysis–can cause amyloidosis.
Here’s a link to a short note I found about this on the Kidney Cares Community website:
More than 5 Years Hemodialysis can Cause Amyloidosis
I have been running into more and more amy/myeloma patients lately. I can only imagine what it’s like, fighting the cancer war on two fronts. (My inconvenient brush with melanoma doesn’t count!)
Amyloidosis affects different patients in different ways–much like multiple myeloma–only more so. I met two patients recently that were both battling laryngeal amyloidosis. Each were struggling to speak.
Here is an abstract from a study I found that focuses on laryngeal amyloidosis. I have highlighted in BOLD some points I felt were most important:
How to deal with laryngeal amyloidosis? Experience based on 16 cases.
Wierzbicka M, Budzyński D, Piwowarczyk K, Bartochowska A, Marszałek A, Szyfter W.Source
Department of Otolaryngology, Head and Neck Surgery, Poznań University of Medical Sciences , Poland.
Abstract
Introduction: Amyloidosis is characterized by the deposition of amorphous fibrillar protein (amyloid) in the intercellular or intracellular space. Localized amyloidosis is rare in the head and neck area. In Polish literature of the last decade it has been the subject of case studies. Aim: The goal of the study was to carry out a retrospective analysis of patients treated for amyloidosis in the Department of Otolaryngology and Head and Neck Surgery of the Poznań University of Medical Sciences in the period from 2000 to 2009. Based on the collected clinical material, the authors made an attempt to determine the most frequent anatomical location of amyloid deposits and the most frequently affected organs, the type and duration of symptoms, the therapeutic approach, further diagnostic measures taken and the final outcome of the treatment. The next goal was to assess the number of microlaryngoscopies performed in patients with amyloidosis affecting the larynx as compared to the overall number of such procedures. Material: The detailed analysis included 16 patients with laryngeal amyloidosis. Results: Amyloidosis of the larynx was found in only 0.52% of patients undergoing microlaryngoscopies in the period from 2000 to 2009. In the vast majority of patients (11 of 16), there was no suspicion of amyloidosis in the initial diagnosis. Only the histopathological assessment definitely confirmed the nature of pathological changes in the larynx. Glottis was the most common location of amyloid deposits in the study group. In all cases, additional studies and long-term monitoring of the postoperative course excluded generalized amyloidosis. Conclusions: Laryngeal amyloidosis is very rare, however it should be considered in the differential diagnosis in patients with laryngeal dysfunction. Surgery remains the treatment of choice in most patients, although the attempts of radiotherapy are undertaken. Preserving the normal function of the organ remains the priority.
I hope both of the women I met feel “special,” because as you can see, amyloidosis of the larynx is extremely rare. Add myeloma to the list, and let’s just say that with bad luck like theirs, I wouldn’t be heading to Las Vegas any time soon!
I’m “betting” that most of us take our ability to speak for granted. I know I do! I hope that their luck improves soon…
Tomorrow I will run the first installment of my patient snap-shot series. Until then, get up and get moving–even when it’s hard to do.
Feel good and keep smiling! Pat
Patient Snapshot: 14 year myeloma/amyloidosis survivor, Roz from Florida
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I write about amyloidosis from time to time, as I did yesterday. So it is only fitting that my first “Patient Snapshot” features a multiple myeloma and amyloidosis survivor. But I’m getting ahead of myself…
Last spring, one of our readers asked:
I wonder if you could share inspirational experiences of the elderly. Folks that learned about the disease later in life (e.g. 70+) and were able to overcome the disease or live with it to make positive contributions. In your many travels I am sure you have heard lots of these…
I asked for reader participation, and I did follow-up with an inspirational patient story or two. But honestly, it wasn’t easy! Not that there aren’t many, many older myeloma survivors that fit this profile. They simply weren’t responding.
Why? Maybe some don’t see themselves as “elderly!” Others may have been reluctant to step-up and share their stories. After all, most of us would hang-back if asked if our lives were “inspirational” and/or had made “positive contributions.” And many from that generation aren’t spending much time on the internet. That’s why I started writing my books. For those who don’t spend their day sitting in front of a computer.
But for whatever reason, I wasn’t having much luck. So recently I started asking survivors with unusual or inspirational myeloma journeys that I met while speaking to support groups if they would consider sharing their stories.
I asked a few questions to get the ball rolling. And I would reassure them that their myeloma stories were interesting and valued–and this seemed to help.
Truth be told, the hardest part about all of this is getting these people to forward me pictures to go along with their narrative. Technology gets in the way again!
That’s the case with today’s inspirational multiple myeloma survivor named Roz.
Roz is an attractive, older woman; short and thin. She has four children, six grandchildren, and three great-grandchildren. Roz was diagnosed with both multiple myeloma and amyloidosis way back in 1997. To me, the fact that she’s still alive and well is inspirational!
But there’s more. Something that makes her exceptional as well. Roz has been in remission for almost 14 years!
14 years with no maintenance therapy whatsoever. That’s pretty amazing!
So how did Roz and her doctors achieve this ongoing feat? Roz underwent an autologous stem cell transplant (using her own harvested stem cells) in December of 1998. That makes Roz the most successful ASCT survivor that I have ever met!
Tomorrow I will let Roz describe her near-death experience back in the late 90′s in her own words. And with any luck, maybe I can coax a picture or two out of her, too.
Feel good and keep smiling! Pat
Oops! It’s a travel day…
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I should have organized my time better last night and this morning. I’m flying-up to Boston today for a reception, and to walk in the Leukemia and Lymphoma Society’s (LLS) Light the Night fundraising event.
Rush hour traffic was especially bad today (YES! There is a “rush hour” here in Tampa) and I have a connecting flight in Atlanta.
I will try and finish my Snap Shot feature about dear Roz–the 14 year in remission myeloma/amyloidosis survivor that I introduced to you yesterday–on my layover.
She’s pretty amazing!
Feel good and keep smiling! Pat
10 Ekim 2012 Çarşamba
"Logistics Lori" on the War Path
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One of the things I have always been really good at is lining up all the things that need to get done and organizing it in a logical manner with tight scheduling and make it happen.
I still had a job! I had left abruptly while my boss was out of town, I needed to get back. We were to close on the house on Monday, June 30th (a week away). Dave was supposed to be home to do that, help me pack (the movers were coming on July 7th) and have our going away party at Gail's house next door. The original plan didn't have me coming out to California until early August! I was going to help find my replacement, train her and take a trip to Egypt with my wonderful friend Paula. (Paula's parents befriended my parents when they were newly married in Louisiana and Paula was my first baby sitter when I was born. She was 9. Before my mother died, she made sure we were connected up. Her parents were long since deceased and my mom wanted us to "have each other". Paula has a wonderful, modest Throughbred and American Saddle Bred horse farm near Lexington, Kentucky and works for Lane's End (a huge horse farm) and Keeneland Race Track. I go there once a year after the world famous Keeneland Horse Sale and we have come to love each other very much. Thank You Mom!)
Anyway, she had been invited to Egypt and invited me to go along. I have never been off this rock and was so excited to be "traveling abroad". This trip was to occur after the move, while I was still in Maryland. I would go for my two week vacation, come back, check in on the new gal and then head out in the car with Kip to California. I would deal with this all a little later.
Right now, Dave could hardly walk or sit and he certainly couldn't drive or take care of himself at Dan & Sarah's all day. He needed someone full time to be there for him and drive him back and forth for radiation. It couldn't be me, even if I wanted it to be. The wheels were turning on what to do and the pieces were falling into place.
The hospital Social Worker had already stopped into meet me (remember I had called the hospital the first night and made sure that they all knew I was coming and needed their help!). I told him we needed a notary to get me Power of Attorney so I could fly home and close on our Brookeville home with the new buyers on the 30th. My wonderful, best ever, realtor, Marsha Crowley had already fax'd the necessary forms to Sarah at work and Sarah brought them to the hospital. The Social Worker said, "No problem. I have a good friend and pastor who does that. I'll call him." The next evening this pastor and his wife came to the hospital and filled out all the paperwork and prayed with us. We overnighted them the next day to Marsha.
Monday, June 23, 2008
I called our son, who had just finished up the semester at Maryland and didn't have a job lined up.
"Hudson"
"Yeah Mom, what's up?"
"Here's the situation...."
"So, can you fly out here in a couple of days and take care of your Dad for me so I can get back home and take care of stuff there?"
"Emmm....yeah, I just need some time to move out and get my stuff in storage."
"Oh Hudson, that's great!"
Ok, that's done! He flew in on Saturday and I flew home on Sunday, just in time to close on the house Monday morning. The child becomes the man...
A note today from what of my buddies in the UK at WhatNow..."I've read some of your blog which is absolutely fantastic; extremely genuine and well-written so please do carry on with it, I agree it will be a different thing to the Caring Bridge one as it is from your personal perspective."
![Reblog this post [with Zemanta]](https://lh3.googleusercontent.com/blogger_img_proxy/AEn0k_sauqIXio5vhzotxeT9cu_M4H7lm8XEaeY2iCwscPH7O6F_QNnnFDh5k31M3ETjqx6UbLfBhjCgaF8T_SbAFI1F5jChsg28eIYNPsxUeScoXPGi2l5KQqTMONCzXl94ZIXTV_GtoiGLLCWYnMVsdBwG=s0-d)
I still had a job! I had left abruptly while my boss was out of town, I needed to get back. We were to close on the house on Monday, June 30th (a week away). Dave was supposed to be home to do that, help me pack (the movers were coming on July 7th) and have our going away party at Gail's house next door. The original plan didn't have me coming out to California until early August! I was going to help find my replacement, train her and take a trip to Egypt with my wonderful friend Paula. (Paula's parents befriended my parents when they were newly married in Louisiana and Paula was my first baby sitter when I was born. She was 9. Before my mother died, she made sure we were connected up. Her parents were long since deceased and my mom wanted us to "have each other". Paula has a wonderful, modest Throughbred and American Saddle Bred horse farm near Lexington, Kentucky and works for Lane's End (a huge horse farm) and Keeneland Race Track. I go there once a year after the world famous Keeneland Horse Sale and we have come to love each other very much. Thank You Mom!)
Anyway, she had been invited to Egypt and invited me to go along. I have never been off this rock and was so excited to be "traveling abroad". This trip was to occur after the move, while I was still in Maryland. I would go for my two week vacation, come back, check in on the new gal and then head out in the car with Kip to California. I would deal with this all a little later.
Right now, Dave could hardly walk or sit and he certainly couldn't drive or take care of himself at Dan & Sarah's all day. He needed someone full time to be there for him and drive him back and forth for radiation. It couldn't be me, even if I wanted it to be. The wheels were turning on what to do and the pieces were falling into place.
The hospital Social Worker had already stopped into meet me (remember I had called the hospital the first night and made sure that they all knew I was coming and needed their help!). I told him we needed a notary to get me Power of Attorney so I could fly home and close on our Brookeville home with the new buyers on the 30th. My wonderful, best ever, realtor, Marsha Crowley had already fax'd the necessary forms to Sarah at work and Sarah brought them to the hospital. The Social Worker said, "No problem. I have a good friend and pastor who does that. I'll call him." The next evening this pastor and his wife came to the hospital and filled out all the paperwork and prayed with us. We overnighted them the next day to Marsha.
Monday, June 23, 2008
I called our son, who had just finished up the semester at Maryland and didn't have a job lined up.
"Hudson"
"Yeah Mom, what's up?"
"Here's the situation...."
"So, can you fly out here in a couple of days and take care of your Dad for me so I can get back home and take care of stuff there?"
"Emmm....yeah, I just need some time to move out and get my stuff in storage."
"Oh Hudson, that's great!"
Ok, that's done! He flew in on Saturday and I flew home on Sunday, just in time to close on the house Monday morning. The child becomes the man...
A note today from what of my buddies in the UK at WhatNow..."I've read some of your blog which is absolutely fantastic; extremely genuine and well-written so please do carry on with it, I agree it will be a different thing to the Caring Bridge one as it is from your personal perspective."
Shocking!
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Looking back now what is so shocking about Myeloma at this time in our journey, was how Dave was working, driving, flying and living his life and then WHAM! He is knocked on his preverbal ass in an instant and can hardly get out of bed. I have to dress him and help him with a shower... I mean, shoot! With my mother in her last cancer which took her life, it was a slow and gradual, gradient decline... This was WAY DIFFERENT. This was like Dave had been in a terrible accident or something and we had to get him back to normal somehow and that would be the road. But it wasn't an "accident". I remember when I helped him step over the 3" tile lip in the hospital bathroom shower, and found something for him to hold on to while I put his dressing gown back on him and his PJ bottoms, I said, as I'm snapping up the back,
"Dave?"
"Yeah?"
"We are way too young for me to be doing this."
"Yeah."
"Ok, turn around, put your arm around my shoulders. Are you steady?"
"Yeah"
"Ok, let's get you back in bed, take it easy, take your time..."
Later...MUCH LATER...we learned that Dave had a compression fracture in his spine at T8 or T9, I don't remember which one. Holy Crap!![Reblog this post [with Zemanta]](https://lh3.googleusercontent.com/blogger_img_proxy/AEn0k_vYGWdEVIxq0qoii_4VFqvpcFeFqLjMobkKC3m2lWgBESTWQER3LyAZRpNeWuafHqstDqvcFV5GGA5yxPwCf7BctjPc1Tvfe9Z5GMUBDEEnS_EjhSxHUaXoAyMj7FP5UWnK82JskDWXZX-69DYXoAo4=s0-d)
"Dave?"
"Yeah?"
"We are way too young for me to be doing this."
"Yeah."
"Ok, turn around, put your arm around my shoulders. Are you steady?"
"Yeah"
"Ok, let's get you back in bed, take it easy, take your time..."
Later...MUCH LATER...we learned that Dave had a compression fracture in his spine at T8 or T9, I don't remember which one. Holy Crap!
The Great Escape!
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Its a Tuesday, the 24th of June. Dave has been in the hospital almost a week now. He is desperate to get out and I'm desperate to not be sitting in a hard chair all day long, but... the pain is really tough. He is having a hard time emotionally taking all these pain meds and they aren't really handling all his pain. He's tired of feeling lethargic and in a drug haze. He's never been sick before, he's never been in the hospital or had to take pain meds. He's an inexperienced patient - very inexperienced. Whenever the nurses ask what his pain in on a 1-10 scale the HIGHEST number he ever gave was a 4. Now he does this while grimacing and writhing in pain. Dan was there one time and said, "LOOK! He's a 10! He's totally lying!" We all laughed. I later learned that all the nurses were adding +3 to whatever number he gave because the numbers were so low they wouldn't even qualify for them to give him anything. It became the joke on the ward. But in reality, Dave kept thinking the pain would go away, so he preferred to wait to see if he was still in pain. This is not the kind of situation where you do that, but he just didn't know. He found himself constantly in the position of what is often called, "chasing the pain". It is not desirable or advised. It made it hard for me too. Here all my life I was a non drug, natural remedy kind of person and I've turned into a drug pusher. Then he was worried about getting addicted. I finally had to break it to him. "You are going to get addicted. But you are not of an addict mind and we will deal with that issue later. Your doctor will help us with that. Please Dave, you can't be in this kind of pain all the time." He was emotional. We both were. This was just terrible.
So we wanted to break out, but Dave wasn't sure he could manage the pain at home on his own. The doctor said he could leave when he wanted. Dave decided we could manage and he was tired of snorting, snoring, farting, rambunctious roommates that kept him all night along with the early morning blood suckers who wake him up to take blood. We decide, we're going. I tell the nurses and they are like deer caught in the headlights. Oh crap, paperwork! I stand firm, "I'm sure you can make it happen." Around 7 pm that night we break out! Its a slow, slow, slow process to physically get Dave out of the hospital and in the car, but we did it. It felt fabulous.
Later on that night as I laid down in Dan & Sarah's beautiful guest room, where Dave had been living for 6 months, I was comforted to be laying next to my husband of 26+ years. We hadn't slept in the same bed but a couple of times while he was away and this crisis brought a lot of emotions. As I laid next to him, it was so comforting to just be gently snuggled up against him while he slept. It was intoxicating and overwhelming actually.
Somehow, we'll be OK. We always are...
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So we wanted to break out, but Dave wasn't sure he could manage the pain at home on his own. The doctor said he could leave when he wanted. Dave decided we could manage and he was tired of snorting, snoring, farting, rambunctious roommates that kept him all night along with the early morning blood suckers who wake him up to take blood. We decide, we're going. I tell the nurses and they are like deer caught in the headlights. Oh crap, paperwork! I stand firm, "I'm sure you can make it happen." Around 7 pm that night we break out! Its a slow, slow, slow process to physically get Dave out of the hospital and in the car, but we did it. It felt fabulous.
Later on that night as I laid down in Dan & Sarah's beautiful guest room, where Dave had been living for 6 months, I was comforted to be laying next to my husband of 26+ years. We hadn't slept in the same bed but a couple of times while he was away and this crisis brought a lot of emotions. As I laid next to him, it was so comforting to just be gently snuggled up against him while he slept. It was intoxicating and overwhelming actually.
Somehow, we'll be OK. We always are...
Brock's Ice Cream Parlor-Blast From My Past
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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.
Since the day was shot, on our way home we stopped at Brock's Ice Cream parlor in Yuba City. Long before Baskin Robbins 31 Flavors, for me, there was Brock's Ice Cream. When we lived at Beale AFB, we would come to town a couple times a year for school shoes and clothes. It was a BIG DEAL for my sister and I and the best part was always stopping at Brock's for a cone! I couldn't believe it was still around and except for a small change on the interior to accommodate folks to sit inside, it had not changed a bit. They make their own ice cream and it is wonderful. It brought back such wonderful pleasure moments for me - in the midst of the tornado, it was a lovely respite. Not too mention getting to share a childhood experience with my husband.
When Dan got home, I did manage to get to the grocery store and make some Beef 'n Barley Stew.
If you find yourself going through difficult times, whatever it is, don't underestimate the value of small joys like this. Its an old story... we take these things for granted. Well maybe we do, but maybe we are lucky enough to not have a reason to view them in a deeper way. I don't know... its an interesting and old concept. But I will say, it had a dual meaning for me. I used to go there with my father and thinking of him always makes me smile. Now, here I was, in a little ice cream place sharing it with Dave in the middle of our crisis, and both he and I had a moment, just a moment, of something pleasurable and peaceful, mundane, normal. I have found that these "little" things really can recharge me and sustain me. When my mother was dying, at my home, and my life gradually and appropriately got smaller and smaller as her needs got greater and greater, I would sit out on my stoop in the backyard with a cup of coffee on a sunny morning and watch the squirrel antics, the birds at the feeder and the baby fox romping around on their way back to the den. I found it filled me up somehow and gave me the strength to easily and fully enjoy my mother's company and care for her as she deteriorated. It can all be such a mishmash really. But I felt very strongly it was important for me to embrace the small beautiful things in the world - it uplifted me somehow, and that viewpoint was serving me well now with Dave. It was familiar to me and something to share with Dave.
![Reblog this post [with Zemanta]](https://lh3.googleusercontent.com/blogger_img_proxy/AEn0k_uhZHsztwbNpcFNmCSLuTM4r6Ilu1SOgGDnQnc8UXt9OVw98Bo3niTB-nyz3VmorgExK620tvJbvSV7oR88ChXlrKUq54d4Crb4npNuYUG9AI9tGk19_grb6HNVJJiFFNarJalTx4nJ_S83o6e8x-Vp=s0-d)
Wednesday, June 25, 2008Today 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.
Since the day was shot, on our way home we stopped at Brock's Ice Cream parlor in Yuba City. Long before Baskin Robbins 31 Flavors, for me, there was Brock's Ice Cream. When we lived at Beale AFB, we would come to town a couple times a year for school shoes and clothes. It was a BIG DEAL for my sister and I and the best part was always stopping at Brock's for a cone! I couldn't believe it was still around and except for a small change on the interior to accommodate folks to sit inside, it had not changed a bit. They make their own ice cream and it is wonderful. It brought back such wonderful pleasure moments for me - in the midst of the tornado, it was a lovely respite. Not too mention getting to share a childhood experience with my husband.
When Dan got home, I did manage to get to the grocery store and make some Beef 'n Barley Stew.
If you find yourself going through difficult times, whatever it is, don't underestimate the value of small joys like this. Its an old story... we take these things for granted. Well maybe we do, but maybe we are lucky enough to not have a reason to view them in a deeper way. I don't know... its an interesting and old concept. But I will say, it had a dual meaning for me. I used to go there with my father and thinking of him always makes me smile. Now, here I was, in a little ice cream place sharing it with Dave in the middle of our crisis, and both he and I had a moment, just a moment, of something pleasurable and peaceful, mundane, normal. I have found that these "little" things really can recharge me and sustain me. When my mother was dying, at my home, and my life gradually and appropriately got smaller and smaller as her needs got greater and greater, I would sit out on my stoop in the backyard with a cup of coffee on a sunny morning and watch the squirrel antics, the birds at the feeder and the baby fox romping around on their way back to the den. I found it filled me up somehow and gave me the strength to easily and fully enjoy my mother's company and care for her as she deteriorated. It can all be such a mishmash really. But I felt very strongly it was important for me to embrace the small beautiful things in the world - it uplifted me somehow, and that viewpoint was serving me well now with Dave. It was familiar to me and something to share with Dave.
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