Sunday, November 30, 2008

Five Weeks

Tomorrow will be five weeks. Alot of my swelling has gone down. Because of the reduced swelling, I can tell the right flap (breast) is noticeably smaller than the left. Also, some of the scarring from previous surgeries on the right that were not covered/removed by the flap are now making "ripples" in my skin. That doesn't matter though. I can MOVE!! Also, the flaps are slightly under my armpits. That does create a slight movement problem, but I've been told that can be resolved at the April revision surgery.

I continue to have healing problems in my abdominal incision. The physical therapist had me doing torso stretching, and that ripped my incision in one area. So no more stretching, and today I'm going to have Jim help me clean that area well, put on antibiotic cream and butterfly bandages, and then we will cover with a clear plastic dressing. I'm not sure what the clear plastic is called, but we use it when Jim has skin tears. It can stay on for up to a week and doesn't come off in the shower. I am concerned that the scar in that area is going to end up 1/4 inch or more wide because of all the stretching to it.

Emotionally, I'm a little down. Not getting enough outside time, I think. I have purposefully gone out for sunshine the last two days, but today is very gray, so no Vitamin D tonic for me today. Ennis (the last cat standing) also is down. I think we may both just be a little bummed out by having no other furries in the house.

Monday, November 24, 2008

Four Weeks Post-Surgery

Written 3 weeks ago on the FDMB:

It's been 3 weeks since my bilateral breast reconstruction surgery. I saw the surgeon last week in Baltimore.

The cosmetic outcome of the rearrangement of skin and fat from my belly to my chest is "above average." I will likely need only a little work when I get the "stage 2" outpatient revision surgery in late April. Just a few nips and tucks to make everything even up top and maybe a little lipo to take out the "handles" at the ends of my hip to hip incision.

The incisions still have a few weeks of healing before I am allowed to submerge in water (bathing, swimming). I am good to go with range of motion physical therapy (PT) on my chest and abdomen, but no core strengthening exercises until after another check-up in 6 weeks.

There is some damage in the intercostobrachial nerve (upper underneath part) of my right arm that may or may not resolve with PT or just on its own. I am having numbness and pulling in my belly in the waistline area. This is above the abdominal incision. That is from swelling where the surgeon cut through muscle to remove the blood vessels feeding the donor tissue. The discomfort in that area may take up to 3 months to resolve.

Some of the donor tissue is starting to "harden" in my left breast. Again the result of the surgical trauma, and I was instructed to frequently massage that area to break up the edema and soften the tissue.

All in all, my recovery is progressing "normally."

Week 4 Update:

I do feel better than I did a week ago. The numbness and pulling at my waistline is starting to resolve. The healing on my abdominal incision continues to be slow; there are large areas of scabs that pull out when moistened and the the whole incisional line is red and puffy. The quick oatmeal bath I took yesterday for dry skin set that incision's healing back about a week.

The incisions on my breast flaps only have small scab areas left, mostly at the corners of the flaps.The hard spot in the upper left breast has not changed in size and I am palpating it (as well as the other breast) a couple times a day. From what I read on the breastcancer.org discussion board, the hardness might likely be fat necrosis, which the surgeon will have to remove during the revision surgery.

I want to recognize the tremendous help I received from Donna, my sister-in-law, and Linda Lee, a friend from FDMB. They each stayed with me for 10 days during my recovery. I can't imagine having gotten through this without their help in caring for me. Donna certainly had the harder "duty" because she got me straight out of the hospital, when I was my most feeble. Linda Lee had different challenges; she had to try to keep me in bed to rest as I kept trying to do too much.

Linda Lee and I did have a few outings while she was here. I am able to drive as long as I'm not on narcotic pain meds. We took her cat Josephine to the holistic vet twice for acupuncture and reiki. We added some other stops to those trips.

Jim now has me full-time, and I wasn't happy the first time he left me alone in the house. It was only for a few hours, and there was no reason for me to be fearful, but I was. I dealt with it by taking a nap. We are living on sandwiches, soup, and ice cream because I don't have the desire to make evening meals, but hopefully I will get over that soon. Thanksgiving is this week. Can I roust the energy to cook a turkey breast and all the trimmings? Hummm.

Ennis has been by my side almost every minute of my recovery. Or perhaps I should say I've been by his side, as he sleeps on my bed all day anyway.

The oddest thing is I am getting my stress rash on my hands. This is something I dealt with years ago, and it always threatens to flair up from time to time, but it hasn't shown itself through this entire cancer journey. Why it would start to flair up now is beyond me.

Wednesday, November 05, 2008

Nine Days Post Surgery


It's been nine days since my DIEP Flap.

The night before the surgery Jim (the birthday boy), Stefani, Cindi, and I went out to dinner in little Italy in Baltimore. I was so very stuffed on eggplant parm amd a huge bowl of strawberry gelati.

The surgery took only 4 hours. Dr. Chang said I had a "perfect anatomy" so the blood vessels were easy to find and reattach.

I was in ICU the first night, limited to ice chips. The next day I was moved to the "women's issues" floor, and continued to be limited to ice chips. Frankly, the ice chips turned out to be the best food I had while I was there. Patient care in ICU was a one to two staffing ratio, but care was just OK because I was there as a surgical follow-up, not as a critically ill patient. I remember very little from the entire experience because of the meds, but there was the ICU charge nurse, Christy, who spent time with me because I was very upset because I could not move, eat or drink, or see Jim. She even called Jim for me to make sure he was OK.

Jim was not going to be able to see me until 11am on the day after surgery, and once the charge nurse in ICU understood that I was not going to calm down until I saw Jim, she worked on trying to get him in earlier. However, Jim, thinking he was restricted until 11am, took a late, leisurely breakfast and didn't get to me until 10:30.

Cindy came to visit on Wednesday noon, bringing a card of well wishes from the FDMB. Stef was going to visit later that day, but I called her off because I was so fucked up from meds.

I don't recommend Mercy Hospital in Baltimore. The food was lousy, response to the call button was excruciatingly slow, I couldn't keep myself focused because of the meds. I was so eager to leave on Thursday that I left before my visit with the Occupational Therapist, which the staff didn't tell me about until I was walking out the door.

Back home to my own bed and my kitty Ennis. He had been looked after by Leslie (from the FDMB) and Nancy, my neighbor. My sister in law Donna flew in the next day, Friday, and has been doing a great job watching out for me.

Jim and I traveled to Baltimore and back Monday for my one-week follow-up with the surgeon. (Very exhausting trip; potholes are no fun; neither are stop signs.) The tissue transfer from the abdomen to the chest area is taking well. No necrotic tissue. I have minimal swelling and redness in the surgical areas.

I was able to have one of my 4 surgical drains removed, and got permission to have the visiting nurse remove the remaining drains as conditions warrant.

I am still on heavy movement, lifting, and position restrictions. I can't even think about standing up straight until week 3. I am to start wearing a belly girdle to compress the area to help it heal more quickly, but it seems too small to get it fastened. Shower restrictions are completely lifted. I have enough pain meds for about 2 weeks, when I will see the surgeon again.

My sutures and bandages are self dissolving, and that should start happening in a few days. The home visit nurse (Joan) came today but the remaining drains were not yet ready to be pulled. Maybe tomorrow.

Donna will be here until Monday. She is doing a project, repainting a crockery cookie jar so that the kitties on the lid look like Max and Ennis. I haven't had much of an appetite, but she has been doing a good job trying to keep me fed.

Linda Lee comes in on Tuesday for 10 days. She is bringing her cat Josephine. I really think Ennis could use the company. I have never met Linda in person, but she is one of my best friends. We met through the FDMB.

On Wednesday I have an appt with Dr. Gillis, the physiatrist, to start rehab. I want to use Michelle Cooper, the dear woman who was my first physical therapist on this road. My earlier insurance had no PT limits, but I believe Medicare does, which I will have to find out about.

Well, the biggest info about this post is that I have taken pictures of my torso. I took one set the morning before surgery. It shows the mess that Dr. Boob had left me in. The second set I took this morning, showing my progress at day 9. I don't want to shock anyone, so viewing the photos is entirely voluntary. The first set is here; the second set is here.

Monday, October 20, 2008

Please Help Simmy



This is the extra-sweet Simmy. Simmy is a diabetic, although he is presently diet-controlled. Simmy's person is Cheryl, and together they are known on the FDMB as Foursavages.

Here are the facts. Simmy need a visit to the vet and perhaps some procedures, and the fund I helped set up some time back to accept donations for Simmy's vet care and medical supplies is too low for what Simmy needs. We have a fund because, well, because we need to.

Here's the deal. Were you thinking of sending me a card while I was in the hospital? Maybe some flowers or a do-dad? Maybe even make a call to see how I am doing?

Could you take that $1, $5, or $10 and instead of spending it on me, send it to Simmy's fund? The fund is at PayPal, and you can read about Simmy and access the link to the fund at his blog: http://simmycat.blogspot.com/. The PayPal link is at the top of the front page.

I would really appreciate your help, and I know Cheryl and Simmy would too. Even if you weren't going to send me a card or make a call, maybe you could consider a donation?

Thanks to all for listening.

Sunday, October 19, 2008

My pre-hospitalization Perm

For some reason, I thought this would be a good idea. The kitty is my dear Lily.

Saturday, October 18, 2008

Hospital and Surgery Info

I've been asked to give details about my surgery and info about the hospital.

The surgery is a Deep Inferior Epigastric Perforator (DIEP) flap. This article includes drawings and photos. The surgeon will be removing an football shaped piece of skin with the underlying fat and associated blood vessels from my abdomen. That piece of tissue will be cut in two, and the blood vessels of the pieces reattached to the blood vessels in my chest area. The following drawing show a unilateral reconstruction; mine will be bilateral.




The surgery takes 6-8 hours, depending on how long it takes to identify the perforators. I will be in the Intensive Care Unit overnight and transferred to the ward the following morning. I am supposed to be able to ambulate on 1st postoperative day and be discharged home on 4th postoperative day.

I will have a second stage revision and nipple creation under local anaesthesia with intravenous sedation on an outpatient basis between 8 and 12 weeks after the initial surgery. The revision is to further refine and finish the appearance of the breasts. There may be scar revisions at the donor site performed at that time.

My surgery is at Mercy Hospital in Baltimore. The phone number to reach patients is 410-332-9000. For those who might not know, my last name is Wood. Visiting hours once I am out of ICU are 11am to 8:30pm. The cheapest parking is to leave your car with the valet at the Weinberg Medical center, which is attached to the hospital. Here is info on directions and parking.

Linda Lee (Linda and Napoleon) is our FDMB contact. She will be in touch with Jim or me, and post info on the Community Board. I will be home sometime on October 30, so after that you can reach me at home. I likely will not be getting on the computer often, so phone is better than PM or email.

Monday, October 13, 2008

Halloween's Coming....

Are you getting your costume ready?



Sunday, October 12, 2008

So What's Up?

Been a long time since I posted. Sorry.

Jim is recovering remarkably well from his knee replacement surgery. He had the left knee done, and presently it is his right knee that is troubling him. He has about 4 more weeks of physical therapy (3x/week). We walk in the neighborhood at least once a day and Jim does mobility exercises in the house twice a day.

Lily, my 15yo tabby cat, has been diagnosed with osteosarcoma (a bone cancer) in her jaw. It presented as a growth in the soft tissue of her mouth, which was surgically excised along with her upper right canine tooth that had been rotted by the cancer. X-Rays showed that Lily is not a candidate for surgical removal of the cancer from the jaw bone, so we are moving to medicine-based palliative care. Other than the cancer, Lily is in great shape for a cat her age. We can expect that she will live at least a few more months, but will start having clinical symptoms that will include drooling and discharge, bleeding, and odor from her mouth. We will be treating her with antibiotics, anti-inflammatories, and pain medications. I have started a separate blog about Lily's cancer journey.

Two weeks from today, Jim and I will be traveling to Mercy Hospital in Baltimore for my Deep Inferior Epigastric Perforator (DIEP) flap breast reconstruction surgery. This surgery will remove the skin and fat from my lower abdomen (without removing muscle), transfer the tissue to my chest area, and reconnect the feeding blood vessels to vessels in the armpit. The abdominal wound is closed like a tummy tuck.

I have gained about 30 pounds in the past year to be able to have the tissue to do this surgery. I'm up to almost 150 pounds. It's not a very attractive look on me, quite a bulbous belly, but the surgeon, who we saw two weeks ago, is very happy with it.

The surgery is scheduled for noon on Monday October 27. It will take 6-8 hours. I will be kept in ICU overnight so that there is constant monitoring of the bloodflow to the transplanted tissue. To monitor, the surgeon will put a doppler monitor in my chest. I will stay two more nights on a regular hospital floor, and hopefully be discharged on Thursday October 30. I will return to Baltimore the following week to have the surgical drains and doppler removed.

Jim will be staying in Baltimore with me, at a hotel across the street from the hospital. We hope to visit with Stefani the day before the surgery, which is also Jim's birthday.

We originally planned to take Ennis with us, but without knowing exactly when we would be leaving the hospital in relation to checkout time from the hotel, we decided to leave him at home. Leslie from the FDMB will be coming in once a day to give him his insulin shot. Because Lily might need to be started on medication while we are gone, she will be boarding at the vet.

The day after I get home, my sister-in-law Donna will be flying in from Texas to stay for 10 days. The day after she leaves, Linda Lee from the FDMB will be flying in from Atlanta for 10 days. The purpose of their visits is to keep me company, make the evening meal, and manage Jim--things like sending him out for provisions. Those flights were made possible by generous donations from two friends of frequent flyer miles. Thank you Dave and Jennifer!!

I have been spending alot of time trying to improve my mobility. I have greatly improved on the fatigue and bone pain fronts. I still have trouble with neuropathy in my feet and legs. I have been seeing an acupuncturist and she has returned some sensation to my feet and flexibility to one of my ankles. (She kindly is giving me a reduced rate.) I joined the local YMCA (on a low-income scholarship) and am taking a class in the Alexander Technique there. That has really helped my overall muscle pain. I also get into the pool and gym there as time permits.

I am paying to take a Feldenkrais Method class, but this Thursday will be my last class. Contrary to what should happen with this movement modality, I end up with cramps and in tears every time I try it. I consulted with a therapist about myofascial release massage on my restricted chest tissue to provide some relief in advance of my surgery, but she didn't want to take me on, fearing she might cause lymphedema in my arm.

And there is the bicycle I bought myself for my birthday. I probably could have better spent that money, because this bike's gearing system is really cranky compared to my old bike (which I sold at a garage sale).

That's where we are. I continue to thank the Powers that Be for my friends and for NED (no evidence of disease).

Wednesday, September 24, 2008

Life's Uncompromising Finiteness

A phrase from John Grogan's Marley and Me. It struck me as extremely descriptive of the new daily perspective that having cancer brings.

Tuesday, August 26, 2008

Jim's Knee Replacement

Jim has just had a total knee replacement. He will be in the hospital from today (Tuesday) through Friday. He is in a dedicated joint replacement unit, and the care so far has been fabulous.

This is him just 4 hours out of the operating room. He has zero pain right now because he had zero feeling. He was given a spinal block and it is still blocking.

I doubt we will see such a smile tomorrow!!

Friday, August 22, 2008

It's a Long Road

Am I well? I think not. Ann says we have more work to do. I need to more fully understand that the person on my resume is no longer here. She's never coming back.

This came up because I have an unfinished book contract, and I can't afford to repay the advance. And I can't find someone to finish it. And I don't know that I can finish it myself.

Jim goes for surgery next week, and I've dedicated next week 24/7 to him. The week he gets home though, we have agreed that I will open up that book project to see what sort of shape it's in and whether I could finish it. Or what I can do to get out of the project.

It feels like that book is a brick wall in the road of my journey. I have to move on. I have to put the past behind me.

I saw Dr. Gillis, the physiatrist, today. She doesn't seem to have much additional to offer. She is putting me back on Cymbalta, a low 20mg dosage, for its off-label use for neuropathy. She wants me to take it at night, to minimize the fog I experienced from it. She wants me off the Klonopin, which I take off-label for restless leg.

She gave me some foot and leg exercises, and encouraged me to keep up with my movement therapies. But that's it. She wants to see me after my breast reconstruction surgery in October to make sure I get appropriate therapy for the surgical scars.

So the road has speed bumps as well as brick walls.

Sunday, August 17, 2008

What's Up Now

Diagnosed in 2/2006. Two and a half years ago.

I hate being part of the cancer journey. I have met many dear people traveling the same road, and have lost some to the scourge. I found out about another one just this week. Gil Crain, an academic who used to do research work for the Governmental Accounting Standards Board. I didn't even know Gil had multiple myeloma, a cancer of the blood plasma. Multiple Myeloma, along with leukemia, took Maryanne McGonagal, one of my support group members, this spring.

Lymphoma, ovarian, pancreatic, melanoma....types of cancer that are far too common in my slowing shrinking world.

Enough of this yaking. Just wanted to let you know I am trying to take care of myself.

And "Mets." It doesn't matter what from. It's a word that lets you know you have, at most, no more than two more years with your friend.

Mets to the bone, liver, brain, lungs. Mets to the bone is painful. You can see the pain, along with the fear, on the face of those with bone mets. Brain mets---the slow loss of cognitive functions. Liver and lung mets---the maintenance chemo and frequent scans---have the tumors shrunk?

I am nearly certain that mets is in my future. Maybe it's the company I keep. I keep hanging out with the cancer support groups, and most of the long-timers there have eventually developed mets.

I'm living somewhere between estrogen and death. Estrogen suppression is a lousy place to be. Tamoxifen for 3 more years, then a 5-year course of an aromatase inhibitor. I'm not sure I'm all that shot in the ass with living the next 8 years, maybe the most if not all of the rest of my life, on toxins.

Cognitive dysfunction. Lethargy, chronic bone pain and muscle aches. Peripheral neuropathy. Locked joints.

And my western doctors have thrown their hands up at my "vague" symptoms. Thank God Social Security saw enough to put me on disability.

I also am giving up on my Western doctors. I now only go to my oncologist's office every 6 months, with only one of the two annual visits with the doctor himself. Otherwise, the oncology nurse. No more regular visits with my general practitioner. I will be seeing the psychiatrist only two more times--hopefully--before I am completely off the antidepressants.

I am in the "survivor" phase, so I had a meeting with the Cancer Center's Survivorship Multidisciplinary Group--a psychologist, a social worker, and an onc nurse. They set up three goals for me.

1. Restart psychotherapy with Anne. Sadly, Anne is going into semi-retirement, but is willing to continue to see me if I need her, but not more than once a month. I don't plan to break in a new counselor.

2. See Dr. Gillis, a psyiatrist at the Cancer Center. Physiatry is a branch of medicine dealing with functional restoration of a person affected by physical disability. I knew Dr. Gillis was at the Cancer Center, but I didn't think I would qualify for her time, given my "vague" symptoms. But the Multidisciplinary Team and my onc think I do, so I see her next week.

3. Contact Guy, the director of exercise services at the Health System's Preventive Medicine and Rehab Institute (PMRI), about a functional study that will be starting soon. This is a grant-funded program where women recovering from breast cancer treatment will be measured, put through a three-month program of exercise services, and measured again. The study is designed to determine how exercise improves quality of life for women recovering from breast cancer treatment. Sadly, the grant writer has left the Health System, and they are having trouble finding someone to take over his responsibilities on the grant. Also, because I would have to make a three-month commitment, I could not join the study until after I recover from my breast reconstruction surgery in late October.

It's designed to be an ongoing study, so maybe come January 2009 there will be a place for me. The benefit of getting into the study is free access to the PMRI facility and sports physiologists for three months.

Meanwhile, I am spending my "mad money" on alternative/complementary modalities to try to relieve the stress/pain areas in my body, and to try to rebuild my core strength (although I am not sure that is going to be possible while I am on the Tamoxifen). I am focusing on musculoskletal modalities. A chiropractor was very good about helping me break the pain cycle, and now I see her every 3-4 weeks. I try to go to yoga weekly. I tried reflexology, but that caused too much pain in my feet. I tried reiki and ionic foot bathing, but didn't see any improvement after a single session (and I can't afford the 3-4 sessions the practitioner said it might take to see possible improvement). An acupuncturist is doing a great job of bringing some feeling back to my feet and toes; I am seeing her 2x/week.

I bought myself a bicycle for my birthday, and am trying to get out on it every other day. Many times, I have to get off and push, but still it's exercise. When I got home from my ride this morning, I did have elevated cardiovascular function.

I am looking into the Alexander Technique classes at the local YMCA, and am on the hunt for a local Feldenkrais practitioner for Awareness Through Movement classes.

Thursday, July 31, 2008

What cancer takes, and shows

This is from a facilitator on my on-line cancer support group. It's one of those "dead-on" statement for me.

Cancer takes everything that we usually associate with why we are loved...control over our bodies, how we look, our management of emotions, our professions. Sometimes it can show people that it is their essence that is loved, not the trappings.

Thank you Leslye.

Saturday, July 12, 2008

My favorite photo--so far


Of Jim and me, on the bullet train from Paris to London.

Friday, June 13, 2008

It Ain't Just Cancer That Sucks

I can get quite annoyed at those who maintain that cancer, as a chronic illness, is unique and requires "special" understanding for those going through it. That is hogwash. My brother and a good friend have MS. I have just fully understood the effect on another friend of her husband's sarcoidosis. Having myself been through noncancer-related chronic fatigue and pain for the last year, I have had some glimpse of the lives of my friends with fibromyalgia.

I stumbled upon a great deal of wisdom this morning in a sarcoidosis support site. I am assuming this is in the public domain, so I proudly reproduce it here. I just wish I could transport back in time about 30 years and put it in front of my young punk face; too many times I was unsympathetic to those with chronic pain, fatigue, and diminished physical and mental function. Geez, I would think; stop complaining and get some exercise or lose a little weight.

May you enjoy this person's writing style as much as I do. If you have empathy for the topic, I need say no more. If you don't, read it a second time, and tuck it into your life experiences file under the "pending" tab.

No Onions and Hold the Malaise—Sarcoidosis and Feeling Like Crap

In the same way that seemingly harmless dew can rust a mighty iron girder until it crumbles asunder, so it is that Sarcoidosis induced Malaise patiently wears vitality down to humbled fragility.

Well now, that might just be a tad too poetic; let me rephrase in my native blue-collar loading-dock vernacular: Sarcoidosis makes ya feel like crap, pal.

If there is one insidious symptom of Sarcoidosis that is understated and most often overlooked by patient and doctor alike, it is Malaise. It’s that overall crappy flu-like feeling where you feel like a swollen, tender, banana slug that just wants to crawl under some wet leaf litter and sleep. And sleep. And sleep. And sleep. Waking only long enough to take a bite of a partially eaten peanut butter cup, sip some warm tableside iced tea, fluff up the pillow and go back to sleep. And sleep. And sleep. And sleep.

When Malaise is acute, one experiences the above. An almost instinctive desire to curl up into a ball and snooze until whatever-it-is seems to pass. Trouble is, no matter how much you sleep (and you can sleep until your jammies are part of your skin) you just don’t seem to get enough rest. You wake, feeling as tired as when you first performed the narcoleptic face-plant. There is a real danger that someone might accidentally call a hearse and you will be zipped up in a body bag and sent to Gently Ditched Funeral Home by way of the rear loading bay.

After a time, all this sleeping has the same effect as psychotropic drugs on the Sarcoidosis sufferer. Reality starts to bend and warp, as one is never sure what day it is or the hour. Did I eat? Did I go to the bathroom? Did I miss that last denture-clenching season finale of Matlock? My God, the dog has left a Dear John letter… he’s even taken his leash. Soon friends and family take the hint and no longer try to entice you to join the land of the living with invitations to dinner, ice cream, or cattle prods. You are left to sleep wherever you have fallen with a few nightlights left on; like the body of Vladimir Lenin, waxy and perpetually in stasis… sleeping forever. If you are lucky, a loved one might occasionally dust your forehead and apply some fresh rouge to your cheeks.

But that is the acute form of Malaise. There is also the laid-back, background noise form of Malaise that permeates the life of a Sarcoidosis chronic. Its like that pot of coffee left on the warmer all day and night, slowly getting more foul with age, ever-present in the air, always in the background, on a very low simmer; so unobtrusive that the Sarc sufferer gets used to its smell without even knowing it. We come to accept that we feel like crap until we don’t remember what NOT feeling like crap ever felt like. And believe it or not there is a comfort in that. In the same way you don’t air-drop coupons for a free Complete Thanksgiving Day Turkey Diner onto an island castaway who has just gotten used to the idea of eating only coconuts; so it is that a chronic Sarkie dreads those days where one feels absolutely normal. It’s a tease. And it makes that background, low hum, low grade fever of Malaise all the more apparent the next day. All of this adding to the already top-heavy pile of psychological baggage we have to endure that resembles the teetering back of the Clampett’s truck on their first foray from Tennessee to the Beverly Hills. Goats and washtub included.

When someone casually asks me what Sarcoidosis is (and they really aren’t interested in anything but a sound-bite answer) I usually site Malaise in this quick retort, “Imagine having the Flu everyday, all year, for the rest of your life.” That usually leaves them nodding blankly as their little sound-bite minds try to wrap around the concept, and I can slip by and walk away.

Sometimes I refer to Malaise as Mayonaise, both for the phonetic word-play and the fact that that is what it feels like sometimes; the once crisp fresh cool lettuce of my life suddenly smothered with a glop of tepid congealed cholesterol laden fatty goop. Besides, as I have mentioned before, Malaise is too pretty a French sounding word for feeling like crap. If we are going to use a French term for it, lets use Merde.

“J'ai la Sarco├»dose et je me sens comme la merde!”

Hold the mayo.

Thursday, May 01, 2008

May 1, 2008

Venita goes to lunch with Sue.
Posted by Picasa

Wednesday, March 26, 2008

Info for Yoo Kay Visit

Hello all our UK friends. I am writing this here so that it is easily accessible to all.

Jim and I are very excited about coming to Europe and having the chance to meet with some of our FDMB friends.

Itinerary

Friday, May 16. Disembark the QM2 in Southampton. The ship docks at 6am, and it takes several hours to check passengers off the ship. We have a private car that will take us to London. Our hotel is not yet firm, but looks like it might be the Novotel London West. Here's a Google Map of it. We would hope to be settled into our hotel and ready to roam about by 2pm (14:00).

Saturday May 17 is free.

Sunday May 18 we are with the tour group for part of the day. The sights they have on our itinerary are: the Houses of Parliament and Big Ben, Westminster Abbey, the Prime Minister’s Downing Street, Buckingham Palace, and the Changing of the Guard, if held.

We return from the continent late on Saturday, May 31 and already have plans to go to the Tower of London for the Ceremony of the Keys with Steve and Sabina at 22:05. Hopefully, we will have dinner beforehand. Our tickets for the Ceremony are for 6 people, so if there are 2 more who wish to join us, please let me know.

We plan to take a day trip to Bath, Lacock, and Stonehenge with a tour company on Sunday June 1. That will be an all-day trip.

On Monday, June 2, we take a private car from London to Southampton for the return ship to the US.

What Else We Would Like to Do

We would like to hook up with FDMBers and thank Elizabeth for her kind offer of her house for a visit. But we would like to stay in London to see some things that are on our "really want to do" list. Those are:

  • London Eye
  • Thames River Cruise (or at least a taxi up the river)
  • St. Paul's Cathedral
  • Tate Museum
  • Tower of London
  • Hyde Park



There might be other "really must do" things that our UK friends can tell us about.

So what in-London sights might FDMBers want to see?

I think it might be fun for a group to get into the same compartment on the London Eye. The Eye opens at 10:00 and departs every half hour. One must be on-site for boarding 30 minutes before the scheduled "flight time." Tickets are £15 for adults, £12 for children.

I don't want to drag folks to tourist spots they don't care to afford or see, but Hyde Park is free, as is the Tate Museum. The Tate has free guided tours at 12:00 and 15:00 on Saturdays. We could do a picnic or some other meal together.

Please comment here or on the sticky on the FDMB reunion Forum. We can have a great time together.

Saturday, February 09, 2008

Surgery Anniversary/Jim's Skin Cancer

Today is the one year anniversary of my last surgery--the failed permanent implant. I do feel so much better now.

I got a call from the surgeon's office in Baltimore. The one where I am scheduled for reconstructive surgery in October. They have added another surgeon and offered to switch me to her so I could get this done faster. But I'm happy with the plan--take May in Europe and have the summer to garden. Save the nasty recuperation for the yucky time of the year.

Jim went to his dermatologist last week and she found a bit of basal cell carcinoma on his neck. She biopsied it, and will do a re-excision later this month to make sure margins are clear. He had a basal cell carcinoma a couple years back, so he gets checked annually for more of those little buggers. Basal cell is the most common, and "easiest," of the three types of skin cancer.

Saturday, February 02, 2008

Flipsyde's Happy Birthday

I had never heard of this group. This song, and video, are amazing. Just....amazing.

Monday, January 28, 2008

The Party's Over!!

Jim comes home from vacation today. This week has just flown. But I enjoyed my piles and projects and honestly feel like I got quite a bit done.

I see the psychiatrist today for medicine management. I am pretty stable emotionally now, so he may reduce my visits to every 3 months. I would like to try for antidepressant reduction again in the spring/summer. Maybe after we get back from Europe.

I was visiting LifeLink to get Methyl B-12 for neuropathy (it worked well on Maxie's diabetic neuropathy), and ran into Evening Primrose Oil. I was looking for supplements that address nerve function, and saw that EPO also enhances Tamoxifen’s ability to suppress breast cancer. There has been a clinical study on it. Took a risk and ordered some; haven't spoken to the oncologist about it yet. That may do no good, though, because he poo-poos all supplements.

The fatigue and bone and muscle pain continue. I have a follow-up appt. with the endochronologist in about 3 weeks, with blood tests for calcium, PTH, and Vitamin D later this week. This has been going on for 5-6 months now. I am really going to whine to the endo this time about DOING SOMETHING!!

I met another breast cancer patient recently. She is in the Saturday yoga class, the one that is not at the cancer center. I believe she is still in chemo at this time, and is considering an autogenous (own tissue) breast reconstruction with a plastic surgeon in Philadelphia. His name is Joseph Serletti. He might be useful for a second opinion on my DIEP flap.

Jim should be limping considerably when he gets home today. He tried one round of golf, and he knees took the brunt of the twisting with the golf swing. Ouch! He also may need to "detox" from all the non-alcoholic beer he drank during the week. He said he "had to" keep up drink for drink with his golfing buddies when they went to the bars. Sigh!

Tuesday, January 22, 2008

Getting Warmed up for Europe

Today, we got our first tickets for our Europe trip. The Ceremony of the Keys--the traditional nightly locking up of the Tower of London. We have invited Steve [and Jock] (formerly in Sweden and now in London) and his wife Sabina to join us.

I have been browsing around for things to do during our free time in London. I am looking at the Tate Britain, which is the national gallery of British art. Its website allows you to identify pieces you want to see and to build a tour, which you then print out and take with you. Admittance to the general collection is free and they have some free guided tours. Sadly, the major Turner pieces will be out of the country at the time of our visit.

My friend Elaina, who has been to Europe, has suggested some other places for me to check out--the Rodin Museum in Paris, the British Museum, and taking a train trip to Canterbury.

Some of the hardest part of this is web pages in foreign languages and currency conversion. Babblefish and other web sites help me with those. I am so computer-dependent, I know I will be just lost without computer access on the trip. I don't know anything about wifi or computer cafes or any of that. Another problem is that for many museums, the exhibitions for May (the time we will be in Europe) are not yet listed on their websites.

If anyone has suggestions for "must do" things in Europe or for internet access, please let me know.

Jim's away for a week on a guys-only golfing trip. Jim has golfed in the past but I don't know if he'll be up for it now. But he will have fun hanging out with the guys and riding in the golf cart. There are some courses they will be playing that do allow the cart on the fairway. Otherwise, I doubt Jim could walk the course. Arthritic knees.

And I have a whole week to pamper my menopause. Can be up all hours of the night, play the TV as loud as I like, put the computer on speakers instead of headphones to listen to NPR. I am getting some things done. Yesterday, I replaced the guts in a toilet, did some painting of cabinets and shelves to go on the walls, washed venetian blinds. Jim doesn't like that kind of chaos when he's around, because I can't finish one job all at one time, and leave my tools and mess out all day and sometimes overnight. The house is almost completely tidied up from Jim's move in, and now I am working on filing stuff in my office that has collected over the past two years. And I will have to start planning for income taxes.

Sue, the woman for whom I am a chemo buddy, did really well with her first chemo session. She was scared, but once the infusion started, she calmed down and was fine. She suffered through the Neulasta bone pain, and was over all the acute side effects in about 9 days. She is getting her infusions every 3 weeks (I had mine every two), so she will have alot more "good time" between infusions than I did. Her next infusion is a week from now, and her husband will be taking her.

Sunday, January 06, 2008

Treatment Buddy

This week, I get to start a new breast cancer journey of sorts. A woman from my online Wellness Community support group lives nearby, and I will be her treatment buddy. Tomorrow (Monday) she is getting her first chemo infusion.

Sue is 50, and was DX last fall with invasive ductal carcinoma in one breast. The tumor was somewhere around 1.5cm, and she had a lumpectomy. One sentinel node showed micrometastatic cancer. There was a differences of opinion about the nature and severity of the tumor, margins, and micromets, but Sue went with the pathology from two of the three labs that agreed. Had Sue taken the third opinion, she would have been facing a full axillary node dissection, which means the removal of all lymph nodes under her arm, setting her up for lymphedema, the life-long painful swelling of the affected arm.

Sue is going to the same facility that did my treatment--Helen Graham Cancer Center--although a different oncology practice. She will be getting the current standard of care which involves 4 infusions of Cytoxin and Taxotere. That likely would have been my chemo treatment if I had it now, 18 months later. The Taxotere is a new generation Taxol (which I had), and is reported to have fewer side effects, most notably the neuropathy, which I still have. Sue is very happy to avoid the Taxol. She is diabetic, and the steroids that are given with the chemo are likely to mess with that some.

Sue also will be getting a full 6 weeks of radiation. Hopefully, I can guide her through that a little better than I was guided so that she doesn't experience a bad burn.

Sue also plans to get a hysterectomy so that she can take the post-menopausal estrogen suppressing drug, instead of the pre-menopausal drug I am taking--Tamoxifen. She prefers the side effects of that other drug.

Sue has been through cancer before, most closely with her daughter, who has had leukemia since she was 12. Sue is a very strong woman, but she is understandably fearful. She has been told that the night before the first chemo is the worst, and I agree with that. It is a fear of a huge unknown. But she seems as medically and emotionally prepared as possible to face the treatment.

How about a bunch of "ATTA-GIRLS" for Sue?