STILL HERE: October 2010

Warning ~ long, and not for the faint of heart

Sutured Heart, by Lyndsay of idlehandsdesigns

There is much to catch everyone up on...I left off many days ago on the day of the fire, a week ago Monday...and I have had many challenging days since. I had to go back to SK that following Friday, and I was so grateful for the few days in between, I was so, so tired. On Friday my friend K so graciously drove me into Manhattan, it was going to be a very long day - four appointments. It was originally going to be three appointments that day...I got a call the day before from SK to let me know that the Breast Surgeon who I had been scheduled to see the following Tuesday had had a death in the family, and they were looking to reschedule me with another surgeon on October 6th...sorry, too far away I told them...they called me back with a "can you be here at 9:30am tomorrow?" Of course I said yes, and then had to call K and make sure she didn't mind getting up at the crack of dawn to get me there for the earlier, additional appointment. I am so blessed that I have friends who are my sisters and will do whatever they need to in order to help me through this.

So I saw the surgeon that morning. He felt that this would take a very difficult but very do-able surgery. They would have to remove the cancerous mass, meaning my right breast, do the necessary work on my sternum to repair it, and bring skin from somewhere else on my body to cover the area (skin graft), since my radiated skin would not heal properly. For anyone reading this that does not know my past history, I had Hodgekins Disease at the age of 14, a very large tumor in my right lung. I had a tremendous amount of radiation to that area, and chemotherapy, and although some felt I would not make it, I went into remission at the age of 17 and was considered cured five years after that. So, the very treatments that saved my life all those years ago are what has been causing me so many physical difficulties since, and they have a name..."late effects".

From the surgeon we had to go to the SK main building a few blocks away, where I had an EKG. They need a baseline for anyone having surgery. Then back to the first building for an MRI.

Anyone that has had an MRI knows that the sounds the MRI machine makes are loud and jarring...but that overall it is not a difficult test. That had been my experience when I had one for my back last year when I was diagnosed with Peripheral Neuropathy, the reason why my left foot stopped working properly (probably from the chemotherapy, and also from the back surgery I had many years ago). Well this MRI was not so easy. They placed a white pad over my chest and said this is what would create the images, and that it would get warm. They had put me in a hospital robe, which is a very light fabric, then covered the white pad with blankets since it was cold in the room.

Well, it did not just get warm...it got HOT. And I tried to tell them this. This heat over the area of my body where my skin is so unhappy and I live my life around trying to keep it cool and calm...it was so hot. They took a blanket off, and rolled me back in. I had to be in there for like an hour, feeling so afraid of how my skin would react to this. When they were finally done, they pulled me out and had me sit up...I was dizzy, lightheaded and shaking. They told me this was normal for some when coming out of the magnetic field. Well it lasted all day and many days afterward. More on that later.

I got to the changing area as fast as I could...the skin on my chest was so red and it was imprinted with the marks from the pad...at first I thought it had burned my skin! It was not burned, but very irritated. The marks faded by the end of the day, and I spent a long time soaking it in the magic Saratoga water as soon as I got home later. I'll write more on the water from Saratoga, another post that's been floating around in my head that I haven't been able to get to yet.

So after the MRI I had been scheduled for another test, which thankfully got cancelled at the last minute. K and I had been in the city all day...thank you so much K, thank you just doesn't say enough.

So, the good part of the surgery news was, as difficult as it would be, in the end I would be cancer-free, and I would have healthy skin over my sternum. This would change the quality of my life in a way that can't be put into words. I just can't begin to describe the pain and discomfort I have been living with for the past two years from my damaged sternum and how it has affected my already "damaged from radiation" skin. They don't give people as much radiation now as they did back in the 1970's when I was treated...but there are many people like me that had gotten radiation back then which has damaged their sternums and skin...they apparently see it all the time at SK. The price we had to pay for being radiation guinea pigs...but for me it saved my life.

Beyond all this, Bear was still not right...E had to take him back to the vet, so I was fielding calls from him, the vet, and then a strange call from the nurse in my oncologist's office. They were scheduling me for an ultra-sound guided fine needle biopsy of my lymph nodes, the surgeon should have explained this to me, she said. It turned out that this decision was made later in the day, I saw him first thing in the morning so there was no way he could have "explained it to me". I was very confused. Did they see something on the MRI? She said the test would be "to save you from a difficult surgery". Well honestly I want the difficult surgery, I want a life back and in order for that to happen they have to fix my sternum and my skin! She said they were working on scheduling it and would call me again. I was not happy and wanted to talk to the oncologist or the surgeon.

I spent the weekend feeling like I had been through a war bombing. The MRI had affected me in a drastic way... I felt like my my body had been pummeled energetically. So, for another week there was no laundry or cleaning done, and I had to go back to SK on Monday. And now I was thinking I may still have to live with my skin this way.

I planned to take the train on my own, I didn't want to ask K or J again, they had both just gone with me once each that week, and E had to work...besides us not wanting to leave Bear alone all day. He was doing a little better but still not eating very well. We were still very confused and worried about him.

Of course it was raining, and I couldn't get a cab and had to walk in the rain up to 53rd street and Third avenue. Again, not a far walk for some, but for me, in the rain, and with my lungs and physical condition the way they are, it might as well have been 50 blocks. And I was still feeling compromised from the MRI. My appointment was at 10:15am and I was there by 9:45am. I had a few minutes to sit and wait in one of SK's nicely appointed waiting rooms.

My appointment that morning was with the plastic surgeon. From here on I will call him Dr. Doom and Gloom, or Dr. D &G for short. I would add "Scare the Pants Off You" but that would make it too long.

The plastic surgeon is going to be one of the "main men" as far as my surgery goes. He will be responsible for removing skin from an area of my body that has not been radiated, for repairing my sternum, and then positioning the healthy skin over the area to cover it up. I realized I had had an expectation about Dr. D & G...every other doctor I had met at SK so far was positive, kind and compassionate...so I wasn't prepared for the demeanor I was going to encounter.

He examined me and basically explained that this was going to be a very difficult surgery, "as difficult as they come" were his words. It would all depend on the depth of work needed to be done on my sternum, which they won't know exactly until they get "in there". Now of course there are great risks with any surgery, but he made it clear that, well, there were significant dangers that went along with this one, and I don't even want to repeat how he phrased that. At least a week in the ICU, in the hospital 2-3 weeks. He felt the skin should be taken from my legs for the skin graft, and that so much skin would be needed that he would take it from one leg, then more from my other leg to help the first leg to heal. He made sure to tell me that this "would not be cosmetic", and the scars on my legs could be bumpy. He also made it clear that the breast reconstruction would also not be cosmetic, that more cosmetic reconstruction could be looked into six months after the surgery, but probably would not be advisable. What he was trying to tell me, and not very delicately, was that I would be lucky to live through this surgery with everything covered and healed...and so of course I felt like "okay I am going to have a big, scary life threatening surgery and if I come out with Frankenstein scars I should just be grateful to be alive and have healed skin". And I will be, I have so many scars that I have lost count, but did he really have to make me feel this way?

And I asked him about the reason for the ultrasound fine needle guided biopsy...he told me that something showed that it looked like the cancer had spread. I assumed the MRI showed this. I was devastated.

The kicker was, he zoned in on a mole that I have had on my abdomen for like, forever. It has gotten larger as I have gotten older, and as we all know, skin stretches. Even on me. (I am very little, for those of you that don't know what I look like.) So Dr. D & G announces, "you need to have that looked at, it looks like a melanoma to me". Yes he really said that. Not, "this is concerning to me and I want it looked at as soon as possible". No. He didn't want me leaving the building without having one of the dermatologists seeing it, so I left Dr. D & G at about 11:15am, and literally waited until 2:00pm to see a dermatologist. And yes, the whole time I was thinking I not only had breast cancer or a glandular skin cancer that now was spreading, and I was going to need a very long and risky surgery, but I also had a melanoma.

When I finally got to see the dermatologist and he told me it was NOT a melanoma and would not even need to biopsy it, I burst into tears. Here was a kind and compassionate doctor who held my hand, and then gave me his cell phone number. He promised me he would see me immediately if I find anything else concerning on me (which I will probably have to take him up on since I found something else on the side of my head, but I just can't deal with that right now). He had the staff photographer (yes they have a photographer) take pictures of all my spots and splashes, and I'm to see him in three months so they can follow them all. He also recommended I see the SK doctor that follows adults who have survived pediatric cancers and all that goes along with them, and he was going to set me up for that. After D & G he was like finding a heavenly angel.

It was 3:00pm when I was finally free to leave. It had stopped raining but I was way too tired to walk to Grand Central, and this time I caught a cab. Word of advice...when not dressed in business clothing, don't ever ask a NYC cabby to take you to Grand Central. Give them a street number, or they think you are a tourist and you don't know where you are. This particular cabby tried to take me all the way around to the Vanderbilt Street entrance, instead of just driving up Lexington Avenue to the Grand Central Terminal entrance there. I had him drop me off on Park Avenue near the Helmsley building, and I was icy about it, and he realized his mistake. But that meant more walking for me. Somehow I was able to grab something to eat for the train home and caught the 3:30 express, and when I got into the car with E, who was waiting there for me at the station, I had another meltdown. Another challenging day.

Remember, I warned you that this would be long.

I had called the oncologist's office on the train on the way home. I told the assistant that I needed to speak to her, as soon as possible...why had no one called me if this had spread? I finally got to speak to her on Tuesday. It had not spread. The MRI had showed that it was basically in the same position that the PET scan from August showed. What happened was, the radiologist who I guess just got around to reviewing that first PET scan I had done at Columbia, found that a couple of my lymph nodes on my left side were enlarged (my cancer is on the right side). They want to make sure there isn't anything going on there. They want to do an ultrasound on that side, and if they are still enlarged, do a fine needle biopsy, so we know exactly what we are dealing with. She said they could have been enlarged because of anything that might have been going on in my system at the time. So, good news, the cancer hadn't spread, bad news, something could be going on somewhere else. I felt so depleted.

I am going to try to be brief for the rest...I was still feeling somewhat like a vegetable on Wednesday, from the MRI on Friday and my wonderful day on Monday, and the news on Tuesday...so I pulled out my "Energy Medicine" book off the shelf. I had been to Donna Eden's workshop at Omega several years ago, when I was still healing from the bone infection, and this work had helped me tremendously...then the divorce, and my mom's illness and her subsequent passing, among other things, had me put it aside. I still get her newsletters and when I got one on Wednesday I had a eureka moment...I knew that my energy fields were scrambled from the MRI, and I realized I already knew how to unscramble them, and I did. She has since revised her book to add more work including what to do before a surgery or invasive procedure. I dragged myself out of the house Wednesday to Borders to pick up the revised edition.

After I left Borders I decided to head over to Panera's to have a little lunch, read my book, and try to feel somewhat human. I was halfway through my lunch when my cell phone rang, the assistant from my oncologists office. They wanted to schedule me for another PET scan. Again, no doctor had called to tell me about this or explain why. Apparently, since there have been so many cluster-blanks and things have been so delayed that it has been nearly two months since the one I had done at Columbia, that they want another...which may (hopefully) do away with the need for the fine needle biopsy. (please, please let those lymph nodes on my left side be back to normal...I have been doing a tremendous amount of lymphatic massage and energy work in that area and everywhere else). So it was scheduled for Friday, meaning yesterday.

E drove me to SK...such a relief to have him there with me and not have to take the train. My appointment was at 3:15pm. We didn't get home until after 11pm. I had a reaction to the IV contrast they gave me, it turned out it was a CAT scan AND a PET scan, and my heart did not like the IV contrast for the CAT scan. I started having palpitations as soon as they sent that stuff through my veins, and no one heard me trying to tell them this...I tried to hold still anyway, I wanted them to get the test done and get their films, I want to know what is going on too...but by the time it was done and they got me out, and I told them, my heart rate was up to 130 and my blood pressure was up. It was scary to say the least. It took quite a bit of time and some xanax to calm it down, they had hooked me up to heart monitor machines and gave me juice and crackers, covered me in blankets. You can't eat for six hours before this test, and so I hadn't eaten all day, was injected with radioactive material for the PET scan, with the IV contrast for the CAT scan, and I had had to drink an iodine mixture for the CAT scan too. I felt like a combustible chemical stew, and I just wanted my heart to calm down so I could get out of there. I will not let them do that to me, ever again.

E and I left the city around 6:30pm. We have started to make a ritual of stopping at the TGI Friday's in Tarrytown on the way home to eat, I like their salmon and mashed potatoes and we know what we are going to get. After SK appointments I just want to get out of the city as soon as I can. So we headed that way, ran into traffic on the way out of the city, of course, it was Friday...and when we finally got to Friday's, at around 8pm, it was closed. Now how can a Friday's be closed on a Friday night, you might ask? When their ceiling has collapsed, that's when. By now I'm just so hungry, and I feel just so terrible, it's so easy to feel like the universe is just messing with you, that all of this is just happening to me and has no impact on anyone else. We had had so much rain in the area the past couple of days that it was causing havoc everywhere, including flooding and collapsed roofs. Not just me, I am not the center of the universe.

E was starving too, and we made it to the Friday's in White Plains, where there was a very long wait, so I told the hostess how I had not eaten all day because of a test, and she was a sweetheart and told us to be quiet as she scooted us to a little table ten minutes later instead of a half an hour. We didn't get home last night until after eleven pm.

So there you have it. You have to realize that I am writing this as much for myself as I am to keep everyone updated...if you have read this far, thank you. I am processing everything as best I can as I go along, and writing about it does help a little.

About the "Sutured Heart" by Lyndsay at idlehandsdesigns ...it is Lyndsay's words, from her product description, that grace the title of this post. "Some see this piece as broken and others prefer mended". Her Sutured Heart jumped off the screen at me, and so did her words. They describe how I feel about myself, my life, how my journey continues...I am broken, then mended, then broken, then mended...and on, and on...full of sutures, scars, punctures, patched here and there, everywhere, bloody. Throughout though, I continue to move through it, knowing I am in this body but I am not this body...and I will continue to do what I need to do to keep this patchwork of skin and bones and flesh and blood together, so I continue to have a vehicle to move through this physical life with, for as long as I am meant to. And hope that sometime soon, I will be back on my yoga mat and knotting malas again.

One of Lyndsay's Sutured Hearts is on its way to me as I write this...thank you Lyndsay.

STILL HERE

Tuesday, October 5, 2010

Good News!

Saturday, October 2, 2010

Broken, then Mended, then Broken, then Mended Again...but Always Whole