In Surgery

Les should be in surgery now. The surgeon has indicated that he plans to take only the lower lobe of the left lung. Prayers, bright light, and calm for Les and his family, and skill for the surgeon.

Reality Checklist

Ennis, my diabetic cat, usually asks for food every two to three hours. Small frequent meals help him feel better. It doesn't matter to him whether it is day or night.

If I am sleeping--napping or out cold for the night thanks to a sleeping pill--Ennis wakes me. It often involves a cold paw applied to my cheek. Sometimes, it is just the presence of this big hulking cat standing next to my head and purring loudly.

It might be advancing age, it might be the effects of cancer treatments, but when I wake I go through a reality checklist. First I decide whether I can be woken. If not, I advise Ennis to go ask his "poppy," Jim. Ennis usually doesn't buy that and I get another cold paw on the face.

So I progress with my checklist. I observe the outside light--am I taking an afternoon nap, is it the middle of the night, or is the dawn breaking? I roll over to check the clock. Will my feet and legs move; will they hold me when I go vertical? Up to a sitting position. Do I need to use the restroom?

Get up, grab a can of food from on top of the TV, pop it and scoop it onto the plate on the bed, and head to the restroom. I continue my checklist. If it's nighttime, the checklist goes like this--Did I brush my teeth before I collapsed into bed? Am I hungry? Did I take my nighttime pills? What day is it going to be? Do I have plans for the day? What's the weather supposed to be?

If it's daytime, a different checklist--What day is it? When did I fall asleep and why was I taking a nap? Do I have plans to get up at a certain time? Is Jim home?

I deliberately ask myself these questions. BBC (before breast cancer), those realities used to just pop into my head. Not anymore; now I need a checklist.

Since Monday night, I haven't needed my checklist. I wake up and it hits me--my brother has lung cancer. I just focus on that, and all the other realities flood into my consciousness, smothering the fear I feel rising in my belly.

I hate cancer.

My Brother has Lung Cancer

Les is the person I love second best in the world, and a real close second to my husband Jim. Les has just told me that he may have cancer in his left lung. He has a tumor in his lower lobe that is something like 2x3 cm. Les said "may" because he has not yet had a sample of the tumor tissue pathologized. But as his doctor told him, PET scans don't lie. The PET/CT scan lit up the tumor in the lower lobe of his left lung.

I'm not sure what I should write here about Les's cancer because he reads this blog. But I don't think anyone who knows him, other than some of my friends, read this blog, so unless he asks me to stop I will write what's on my mind and in my heart.

Les has multiple sclerosis, diagnosed maybe ten years ago. He has been so brave in that struggle, still working full-time or more, despite what are now very serious physical limitations.

Les is four years younger than me, and the only one of my six siblings I keep in close touch with. Most of my siblings have hurt me, emotionally or physically, in some significant way. Les never has. He adores his wife Donna, and has two adult daughters he holds dear, and a number of grandchildren.

Our family of origin was very dysfunctional, and with the abuse, my siblings and I became loners or went outside the family for emotional support. I was not close to Les growing up, although he was a nice enough kid. I "remet" him at a family wedding in the 1980's and we hit it off like gangbusters. How could I not be drawn to this brother who was intelligent, and funny, and hardworking. We ruined many a wedding photo cracking up at the raunchy jokes we whispered to each other.

Les lives in rural northeast Texas, and easily picked up the Texas drawl when he moved there. He sounds like a native. He has worked for years for oil field service companies. He is very mechanically inclined; as as my sister-in-law says, he is handy as a shirt pocket.

Les tells me he has been going through diagnotic testing since December 19, 2008. It all started with a chest X-Ray, although I don't know the reason the X-Ray was taken. Seeing a suspicious area, testing proceeded to other imaging methods, as well as a bronchoscopy to remove a tissue sample for pathology. The doctor was not able to get deep enough into the lung to get a sample of the tumor, but other tissue taken from the procedure was clear of cancer cells.

Les is seeing a thoracic surgeon this Thursday. Les has been told that regardless of whether the tumor is cancerous or benign, it has to come out. Therefore, the doctors are not planning a needle aspiration of the tumor; they plan to go straight to surgery. Les says that by this time next week, either the lower lobe or the entire left lung will have been removed. Les has had pulmonary testing that shows he will be able to function with his right lung alone.

Yes, Les is a smoker. Our father died young of lung cancer, with metastasis to the brain.

A Long Overdue Update

It's been almost 3 months since my reconstruction surgery, and I am so sorry to be remiss in giving updates.

I am just flat-assed happy that I had this reconstruction done. I am finished with physical therapy, and have complete range of motion (ROM) in my left arm with almost no discomfort. My right arm ROM is vastly improved over pre-reconstruction status, although not 100%. But manageable, very manageable. And it may continue to improve over time. Experience shows that it takes me about a full year to fully recover from a major surgery.

My abdominal swelling is completely resolved, and I can button my jeans again. YEAH!!

I found myself slipping back into clinical depression after the surgery, and I really couldn't understand why. My therapist suggested I go back onto antidepressants, but the nurse practitioner that I wanted to see in the office was not taking new Medicare patients. (Why this place screws with mentally ill people has always confused me.) But over time, the depression lifted. I mentioned this at a cancer support group meeting, and someone suggested it might have been anesthesia-induced depression. I had never heard of such a thing, but it certainly made sense.

I have started exercising again, mostly at the YMCA. I try to do at least 2 yoga sessions a week, as well as something else. Sometimes the something else is a mile or two on the stationary bike. This week the something else was a class called "Dance NRG" (energy). Semi-aerobic, lots of bouncing and stretching, quite a challenge for the sensory neuropathy in my feet and the motor neuropathy in my legs, and a real brain teaser for my cognitive impairment--trying to remember the steps. I just might do that class again next week.

I am trying to get into an exercise study for breast cancer survivors. It would involve 14 weeks of supervised exercise at a pretty classy rehab facility. There would be pre- and post-study measurements. The one problem is that the study would have a randomly chosen control group. The control group would get the measurements, but be asked not to engage in an exercise program during the study period. I will not be part of the control group, even if it means not joining the study and thus not getting the possible opportunity for the supervised exercise.

I lack stamina right now, and I know exercise, and nutrition, will put me back to right. And we all know how bad I am about nutrition, so exercise is necessary.

Here's an example of lack of stamina. Yesterday, I did about 2 hours of running around chores, and then about 2 hours of housework. Nothing really physically challenging. I watched TV in my bedroom in the evening, and laid my head down at 10pm for a quick nap. I woke at 1:30am. I hadn't realized how pooped I was.

Jim has been away this week at Myrtle Beach for a guys golf week. It's been nice to get a little alone time, and not have to plan and make dinner every day.

We haven't had such a great 2009 so far. At New Year's, Jim and I both came down with a GI tract virus--vomiting and diarrhea. It wasn't the flu; no fever or muscle discomfort. Jim had it for 3 days; thankfully, mine was only one day. Then Jim had in-office surgery on his head for a basal cell skin cancer. The next day he was diagnosed with macular degeneration. We saw a specialist, and he had the dry kind in his left eye and the wet kind in his right eye. His left eye isn't too bad, but the right is. He has started treatment on his right eye, which involves the injection of a small amount of a chemotherpy agent into his eyeball. Every six weeks. The shot isn't painful, just frightening, so I will be pre-medicating Jim with some valium before his next shot. (There is no treatment for the dry type of macular degeneration.)

I had been suffering since early December with a full body rash. Our dermatologist gave me a cortisone shot and some acid mantle cream, and although the rash and itching were reduced, they did not fully resolve. When the DR saw me 10 days later, she declared that I had scabies, which comes from mites. The DR said I probably picked them up in the hospital. Both Jim and I had to be treated with a Permethrin cream, and our bedding, towels, and clothes had to be washed in hot water, or put into sealed trash bags for two weeks. I still have some itching, but I think it is just my normal winter dry skin.

And of course, there are our new babies. Emma Leah is a grey tabby with white bib and legs, and Casey is an orange tabby with white bib and legs. When we got them in early December, Emma was 4 months and Casey was 6 months old. Both came from shelter/rescue situations. Casey brought in a very nasty upper respiratory infection, which all the cats got, including Grandpa Ennis. It continues even now, with Casey finally on a course of Doxycycline Hyclate (an antibiotic) because he is now sneezing green snot.

Ennis isn't thrilled with the new cats, but he's becoming accustomed to them, especially now that he is over the conjunctivitis he picked up from Casey.

So what does the future hold? Jim is toying with the idea of going to Clearwater, FL, in March for part of the Phillies spring training. I am starting back on that book I still need to write for the AICPA. I have revision surgery on April 27, where the surgeon will be making cosmetic corrections to my breast flaps and adding nipples. Jim may have his other knee replaced this summer....he seems reluctant to go through it again. Other than that, we are just looking forward to the end of winter, even though we have been very fortunate with little snowfall so far.

Water Fountain in a Japanese Mall

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.

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.

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.

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.

My pre-hospitalization Perm

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

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.

Halloween's Coming....

Are you getting your costume ready?

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).

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.

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!!

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.

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.

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.

My favorite photo--so far

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

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 Sarcoïdose et je me sens comme la merde!”

Hold the mayo.