Tuesday, May 03, 2011
Wednesday, April 27, 2011
I saw the Surgeon's Physician's Assistant yesterday in Baltimore. Thank you Jim for escorting me and being my chauffeur, caregiver, and psychological therapist. My main complaint to the PA was pain. I have been working from the instructions the surgeon's office sent me about revision surgery, the same surgery I had in April 27, 2009. I didn't blog about the results of that surgery because that was when my life was out of control knowing that my beloved brother Les would die sometime that year from lung cancer. However, Jim's and my memory tell us that the April 2009 surgery was an easy, quick recovery that gave little pain.
The problem is that this last surgery was not just a revision surgery. It included what is called a revision of the deep inferior epigastric perforator (DIEP) free flap with the elevation of the inframmary fold.
I know what that meant, in terms of how it would look afterward. It meant that the lower portion of my right foob had no "lift" to it, as my left food does. The right was lower and far less "perky" than the left. I specifically asked for this revision. I wanted the two foobs to look pretty much the same. And because we were going in for that lump, while we were there, why not do a touch of cosmetics? A touch of cosmetics.
This is the description portion of the surgical report.
What my most marvelous, artistic, genius surgeon Dr. Chang did to accomplish this "lift", without explaining the process to me, was open my right foob along part of my pre-existing surgical scars, cut my foob away from the chest wall, move it north on my body 2cm, and then secure it down in that new spot by suturing the tissue to my chest wall with dissolvable sutures.
This part of the procedure was not close to the revision surgery Chang did in 2009 when he liposuctioned some belly fat to inject into my foobs to "round out" imperfections, which he also did some of this time. This, to me, was closer to the original DIEP free flap surgery in November, 2008. During that surgery, the surgeon held me in the hospital, including in ICU, for three days.
I didn't know about this process until yesterday. The surgeon basically rearranged the foob part of my body. Why wasn't I in the hospital for at least one day with heavy pain meds? Why did they send me home with Percocet, a drug that might be adequate for a minor sprain?
There are stitches holding my foob to my chest. No wonder my foob hurts like hell when I bend over. The stitch is being pulled then, and also when I try to stand up straight. Until my foob reattaches itself to my chest and those internal stitches dissolve, I should be assuming a shoulder hunched, belly bent position as I did for the 3 weeks after the original DIEF flap surgery. Why didn't someone tell me about this before yesterday?
Jim and I have been very confused about why I have been having so much pain from a "revision." I haven't been able to stand to cook. I haven't wanted to go out in the car to eat at a restaurant. Jim has been fending for himself with pixxa and sandwich joints, and I have been getting very little food because my caregiver doesn't do cooking. I have lived on boiled eggs, steamed spinach, and bread. Soup sometimes.
Now that I understand the anatomy of the pain, I am no longer trying to deny it. This is undeniable pain. Imagine--a very skilled and competent surgeon cut your breast tissue away from your chest wall, moved it north a couple centimeters, and then sutured it back to your chest wall. You would be horizontal for a couple of weeks.
That is what I now am going to be, for the next week or so. Meg, the PA, gave me a script for Hydrocodone, 1 2mg tab every 6 hours. I know from my former neighbor Nurse Mary's guidance on pain management that I need to layer this with Ibuprofen. I plan to put myself in Lala land (and that has nothing to do with Lantus) for the next week. I will be horizontal most of the time. I will rest and heal. I no longer will be denying the pain.
As for the lump? Meg told me the pathology was not yet available. It had been nine days. Did that mean that something was wrong? Were they asking for 2nd opinions from other pathologists? No she said. Easter. The holiday must have slowed thing down. Bullshit. Even though this is a religious (maybe Catholic) hospital, I has called and they were open on Good Friday. Then when I saw the surgical report, I freaked out. This lump came not from the belly fat or skin, but from the breast skin remaining after all the procedures. Fuck. Can breast cancer metastasize to the skin? I have never heard of that. But, crap happens.
The path was run this morning and that is when the report came back to the surgeon. I had it faxed to me. It is impossible to fully read because it has a grey background. (A readable copy is now in this post.) From what I can read of the diagnosis portion of the report, it says "no tumor seen" NO TUMOR SEEN. That means no cancer, right? That is consistent with last fall's CT and PET scan that found nothing unusual in that location. I asked for a copy of the report to be mailed to me. I will have my oncologist look at the report and explain it to me. I also will talk to Dr. Chang about it. I may ask for a 2nd opinion on the pathology.
I promised myself after going through yesterday that I will always be more proactive about my health. If I feel a lump, it will no longer take me a year to schedule an appropriate surgeon to take it out. I will call when I have post-operative undeniable pain. I will....I will...I will head to bed now because I took one of those hydrocodones. I must rest and heal. This week will now be another "blown" week. But it's Wednesday. Not much more left to this week. The horizontal position may continue into next week.
Friday, April 15, 2011
Some accounting for you all. Sorry my "table" isn't prettier, but I can't get html to work.
Pink Ribbon registration with course material and shipping...$935.90
Pink Ribbon stickers to put onto various materials......................10.00
Remaining budget to cover travel and food during training
...and other miscellaneous costs..................................................254.10
Price reduction from the Pink Ribbon Program developer............(100.00)
Total to fundraise...........................................................................$1,050
Some of you are aware of my breast cancer diagnosis and treatment that started five years ago. Only some of you are aware that I live with chronic pain as a result.
Part of my pain is in my chest and right arm, the combined result of the mastectomy, radiation, infections, and reconstruction. I will never be free of that pain, but I can reduce it by daily stretching and massage of the area.
I want to bring the Pink Ribbon Program to my area. It's a long story of how I got to this place on my cancer journey: months of diagnostics (doctor visits, X-Rays, and MRIs), chiropractic adjustments, physical therapy, treatment by a physiatrist (a medical doctor specializing in pain management and rehabilitation), and attempts at regular exercise at my YMCA and my local Wellness Community.
A common condition that women with mastectomies and radiation encounter is frozen shoulder. I had it, I got therapy for it, but I have to continue daily exercises or it will come back. That is because the therapy cannot "fix" the skin and muscle damage of the cancer treatments. It can simply move me to a point where I can tolerate daily exercises to ward off future occurrences.
And the exercises I have to do are not "general" exercises. Certainly, the cardio sessions in the pool and yoga and pilates help. A lot. But I must do "specialized" exercises that target the areas of my body that "freeze up."
I am not the only one. This is common among breast cancer survivors who had mastectomies or radiation. Those treatments damaged our bodies.
Thanks to targeted therapies, women and men with breast cancer are surviving longer. But with longer life comes late effects from the treatments. The healthcare community has only recently come to recognize those effects. Now it is time to focus on treating those effects. Or at least to bring the knowledge that does exist about treating those effects to a broader group of survivors.
And it is my goal to spread that knowledge in my local community: Wilmington, Delaware, and surrounding areas.
I have joined with Karen Feeney, my chiropractor and a personal trainer at my local YMCA, and Fa Lane Fields, a survivor with late effects much worse than mine who is starting up a cancer support group at the same Y, to bring the Pink Ribbon Program to our area. We want to bring the knowledge of that Program into our community, especially into the Y, to move breast cancer survivors toward wellness.
Thus, we have created Moving Toward Wellness. We have started a Facebook group that all are welcome to join. We hope that area breast cancer survivors and those concerned about breast cancer survivors will join the group to follow our efforts and to spread knowledge about wellness opportunities.
I have created a poster about our effort to fundraise for the Pink Ribbon Program training. I ask you, my Facebook friends, those who read my Blog, and others that I contact with the link to this post, to help me with my goal by contributing. Information about donating by PayPal or check are in the poster. If you can spare even $5, that will get us on our way. Many hands make small work.
Thank you for reading my appeal.