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Wednesday, April 26, 2006
5:12:27 PM EDT
Feeling Sad
NANCY'S OBITUARY
2/21/2005 11:28:00 AM  Nancy K. Pfister Lytle
Nancy K. Pfister Lytle, 47, of Cincinnati, formerly of Wilmington, died Thursday (Feb. 17, 2005) at her home.
She was born Aug. 17, 1957, in Wilmington, a daughter of Stanley A. and Joanne Mongold Pfister.
A graduate of Wilmington High School, class of 1975 of which she was class president, Nancy also graduated from Morehead State University, where she majored in journalism. She was employed by F and W Publishing in Cincinnati as an editor. She was a talented artist and painted several local Wilmington scenes that were later published in book form, including the interior of the court house and signs on the Little Giant.
In addition to her parents, who now live in Brown County, she is survived by sisters Jane Gallagher of Warren County and Dianne Dayton of Clinton County; brothers, Steven Pfister of Piqua and Craig Pfister of Wilmington; and special friends Tracy and Kaycee Deyhle of Cincinnati.
Services will be held 1 p.m. Monday at the Chapel at St. Mary's Cemetery, 701 E. Ross Ave., Cincinnati with burial following. Pastor Steve VanKuiken will officiate. Visitation will be 6 to 8 p.m. Sunday at the FISHER-EDGINGTON FUNERAL HOME, 97 W. Locust St., Wilmington. Memorials may be directed to the Christ Hospital Cancer Center, 2139 Auburn Ave., Cincinnati, 45219 in Nancy's memory. For more information or to access the online register book, visit www.edgingtonfuneralhomes.com.
Written by proudlyout2
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Saturday, April 22, 2006
6:46:06 PM EDT
Feeling Quiet
Hearing NOT REALLY LISTENING TO, BUT HEARING: Melissa Etheridge's "I RUN FOR LIFE"
PART 4 (CONCLUSSION): "JUST THE FACTS MA'M" OUR/HerSTORY (Nancy's, Mine, & Kaycee's)
FORWARD: She got out of the hospital after being in the coma right before Thanksgiving of '04. We were so VERY THANKFUL that she was able to not only come home, but WALK (as if nothing had happened) through our HOME DOOR AND spend Thanksgiving w/our families! The doggies were happy to see her too! BUT, things were going to spiral down from this point at a rate we would have never guessed.
It started first after the 2 weeks of daily radiation. We went for her first Chemo Tx in about 2 months (after the surgery & rad), and they did the weekly blood work to find out how her red blood cells and platelet count was holding up. Since she had not received ANY chemo in nearly 2 months AND since they were still giving her the bi-weekly shot to keep her counts up, we (or they) were not expecting to find her platelet count so low. It was in the 20's! They will NOT give ANY type of chemo (most of the kinds of chemo out there, anyway) if your platelet count is BELOW 100!!!!!!! Instead of chemo, she had to get a platelet transfussion (by this time, we'd become quite used to blood transfusions--she did have to have a few due to her red blood cell count being so low despite the shot to try to keep it up). The following week, the same thing...no chemo; platelet count back down...this time just barely hitting 20. This was in January. The following week, same basic thing and the doctor started talking about Hospice. (He actually had brought it up before, but Nance was never ready for it. And as long as we were *getting along* and were comfortable w/out the help at home together, it was OK by him).
By this time, Nan hadn't received any chemo since the first week or so in Nov. The lesions on the skin were not only back in full force, but were spreading rampantly down towards her abdomen. At this point, we were now running out of Tx options (and Dr. Cody once again brought up the idea of Hospice. Again Nan dismissed that idea and asked if *he was giving up on her*). STILL,even w/the options seemingly now gone, Dr. Cody said to Nancy "it may be a long shot, but there may be one more Tx we can try, it isn't really a chemo med, but it has shown to make some improvements in some cases. Do you want to give it a try? It's a pill that you take at home, 2 pills really. One is an antibiotic, (often, as I found out, used in the Tx of cancer....strange) the other used in cancer Tx's". Nancy (by this time, I wasn't giving my opinion of what she should/should not do, this needed to be HER decision and HER decision ONLY) said she wasn't ready to give up just yet, that she would like to try this pill. They began her on it that day. It did clear up some lesions, but not many. She wasn't on it an entire month when she needed to be hospitalized again (I can't remember exactly why, now, but think it was yet another platelet transfusion that they actually gave her reluctantly because we knew by this time that she could have a platelet transfusion every three days & her platelets would still drop no matter what).
We were there a few days when her doctor came in and told us she could go home IF she was willing to let Hospice come in and help out. This was the VERY FIRST TIME HE ACTUALLY FORCED THE ISSUE and to be honest, on hind site I'm glad he did as we still were not able to see the truth; wouldn't accept it). This was the morning of February 4th, '05. I remember the date because this was also the date of our commitment ceremony right there at her hospital bedside...we always wanted to do that, but just never got around to it. I promised her that SHE WOULD NOT leave this world w/out us getting *married*. Our minister came to the hospital and that's when we finally did it. Nance did NOT leave this world w/out us getting married. (And, remember I told you what a wonderful Onc she had? Well, he went down to the gift shop HIMSELF and picked out a planter to give to us for our commitment ceremony!) AND, one of the nurses from the Cancer Clinic came up and was a *guest* at our ceremony and took pictures for us (she actually sent them to me).
Nancy was getting worse and had been really, at least physically (hind site again, as we just don't always want to see the truth even when its staring you right in the eyes). She was having a difficult time standing/walking and would often fall. Because she'd gained so much weight from the steroids (up to 210lbs before she passed away) I couldn't pick her up from the ground even w/the help of our daughter who was/is 17 and EXTREMLY STRONG for a girl her size and my dad. We had to resort to calling 911 when she would go to the ground (never by falling hard) and it would take 4 or 5 of the guys from the fire department (in Cincy they send a damned fire truck BEFORE sending a life squad; apparently the EMT's ride in the truck?) to get her back up & on a couch. BUT, her brain was still functioning VERY well even after that last hospitalization; or so I thought at the time. Now, that I look back, tho, it wasn't functioning as well as I was *seeing it* at the time.
On Feb. 4th, '05 when we brought her home w/hospice coming to the house, she was still able to make decisions on what she did & did not want from hospice....most things they provided she was OK with, but she DID NOT want a hospital bed; I think it was partly due to me, but I think she really did not want to sleep in a separate bed from me. By the time she got home (hospice provided an ambulance for transporting her so I wouldn't have to do that and it would make it easier for her instead of having to get into my truck), they had everything here...oxygen, the Hoyer Lift I had requested (to make it possible for me to get her off the ground if she went down--I knew how to use these because I've worked w/physically disabled adults who were para/quadriplegic). Everything we needed was here. The nurse came the very next morning and the rest of their services for us were set up.
Nan was in good spirits and, like I said, still able to make her own decisions. W/me helping her, she mostly *remembered* which pills to take when. She was still walking but getting weaker. So, to make it easier, we brought up the wheel chair. We also brought in the portable toilet (making it easier since it was higher off the ground than the permanent one). But, she was still eating by herself, watching our Soap Opera's (and following the story lines), etc. Hospice had been coming in less than a week and by that following Sunday (after leaving the hospital--just maybe a week earlier), it was apparent I was losing my Nan. (A friend of ours came to see her & she wasn't responding to anyone/thing now.)
We had lots of visitors. Like I said, one of my/our best friends came to visit Nan (me) on Sunday. Monday was valentines day and a friend of hers (from her college days; a sorority sister) came by. I remember this date as her friend brought flowers & I bought flowers & had them delivered to our house. It was also the date that she agreed to let Hospice bring in a hospital bed (it was delivered and set up on the same day). On Tuesday, one of her brothers came down to see her and actually stayed at the house to help my mom (in case she had to be moved for any reason) while I went to Wal-Mart to buy a comforter for the hospital bed (I bought a matching one--one that matched the one on our bed). Incidentally, we had the hospital bed set up right next to our bed so I could put the bars down at night & cuddle w/her).
Tues. night, I became VERY WORRIED because Nancy's breathing was very labored & uneven, plus she had a fever & I could not get her medicine down her at all. I called the hospice nurse in the middle of the night. The on call Nurse came out. By the time he got here, her breathing had improved somewhat. BUT, still I wasn't able to get her pills down her (and the morphine drops would not really have had effect on a fever). Finally, he (nurse) was able to get her pills down. He left.
Wednesday was a busy day & one that I will regret for the rest of my life. We knew we needed to finish getting things in order (funeral) and that death was getting close. So her sister, our daughter, & I met in Wilmington, OH (her home town, and where we had lived in our house for 10 of our 12 years together) at the funeral home. Nan & I had already purchased (well, I was making payments on them) our plot. We used to joke that it was *condo* because we will be in the same grave; one (Nan) on the bottom & one (me) on top. It wasn't paid off (my part still isn't) but we knew where our final resting place would be AND, MORE IMPORTANTLY, that we'd be together in the end. Anyway, I spent that afternoon in Wilmington, OH at the funeral home AND catching up w/a few neighbors to let them know we were close to the end. Knowing what I know now, I would have come straight home instead of *visiting* w/old neighbors. We did get the funeral planned; everything, the casket picked out, paid for, AND I had taken the cloths w/me that she would be buried in when the time came.
Thursday morning (February 17th) at 2:30a, I woke up to go to the restroom. When I returned to our room/bed, Nance's eyes were opened for the FIRST TIME in over 24 hours!!!! I was glad, but tired too. I told her, (and yes, I remember the EXACT WORDS I said to her) "Nan, we have a big day tomorrow, so we need to go back to sleep. I love you, baby" I kissed her on her lips. She said, "I LOVE YOU TOO." These would be the very last words SHE SPOKE TO ME.
I woke up about 7:30a feeling very nauseous; I suffer from Migraines & had one that morning. So, I got up, took my pain meds & the pills (Phenergan) to stop from feeling nauseus and came and laid down on the livingroom couch. I woke up to the noon edition of the news on TV.
I walked back to our bedroom to check on my Nance before heading to the bathroom. I stood there for just a second and realized there was something different about her. SHE WAS GONE!!!!!!!!!! I called my mom and she came in and confirmed what I thought. (She said she'd just been in there a minute earlier & Nancy was still breathing---her breathing was very labored that morning when I had gotten up, so it was easy to hear/see her breathing). I looked at the clock....it was 12:45p, just 15 minutes away from the start of *OUR* Soap. I called the hospice nurse and they came out w/in a half hour & pronounced her.
I told Nan I loved her & kissed her on her lips. Our daughter, Kaycee is her name, & I just hugged one another. Her family came down (they're all an hour plus) away. Somewhere between 5 & 6p, we let the funeral home come in and take her body (they were wonderful....1st they had traveled an hour to get here, then they waited until WE were READY before taking her, AND, they did NOT, upon my request, cover <zip the body bag all the way up> her head/face until they got all the way out to the hearse AND asked me if it was OK).
This was a very hard 10 months for us (Kaycee, Nancy, & I). WE (Nan & I) had plans....BIG PLANS. She wanted so much to watch our grandchildren (ummmmm, when that time came, LOL....Kaycee was only 17 when she passed away, so no-one was pushing it) grow up. We wonted to finally have that commitment ceremony to include our friends and family (well, those that would come anyway...everybody on her side, and everybody that meant anything to me, except my mom who we knew wouldn't accept this, on my side). After our March 19th, 2005 commitment ceremony, we were going to take a *FAMILY-MOON* to Hawaii---we'd kind of come into just a little extra cash and were going to be able to do it. We were slowly (before Nan got sick again) getting back on our feet & were going to be able to move back out of my parents house. WE WERE GOING TO BUY MATCHING ROCKING CHAIRS & WE WERE GOING TO GROW OLD TOGETHER!!!!!!!!!!!!
We'd raised Kaycee together since she was 6 years old (Kayc is my biological child from a previous, albeit not married, relationship). Still, Nance was more of a parent to Kayc than her bio-father would EVER be). Kayc is a great kid & we knew how lucky we were. We looked forward to the day where she found her love, got married and had child(ren) of her own. It just wasn't meant to be.
Nancy is HOME now. Someday, I'll be HOME w/her & we'll be together again. Till then, I'll always LOVE MY NANCY.
Tracy
Written by proudlyout2
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6:25:14 PM EDT
Feeling Quiet
Hearing NOT REALLY LISTENING TO, BUT HEARING: Melissa Etheridge's "I RUN FOR LIFE"
PART 3: "JUST THE FACTS MA'M" OUR/HerSTORY (Nancy's, Mine, & Kaycee's)
The great thing about Christ Hospital was that I NEVER (well, except for one very stupid tech who really didn't matter anyway in the whole scheme of things) TRULY respected me for who/what I was to Nan AND considered me as part of her HEALTH CARE TEAM.
Like I said earlier, Christ Hosp was a ONE STOP SHOP. Everything was right there.....need a bone scan, it was there, need a cat scan or other x-rays, right upstairs you go on the same day you are having (and even during) your chemo tx's. Need another specialist for another reason, they're there too! Need to be hospitalized...yup...right upstairs. And we needed all of that.
Back tracking here just for a moment. Nance did not yet have a port (since she was able to endure the *fire water* (as she used to call it) going through her veins the first time around, I guess--just not really sure why, really) they did not place a port-a-cath (a means of easy access to the veins EVERYTIME w/VERY LITTLE PAIN, IF ANY AT ALL,----I know, I have one myself) into her chest wall. That was one of the 1st things they needed to do. So, in May she had one surgically put in. That one decided to get infected (that can happen w/Ports; truly nothing that isn't uncommon). She went through 2 or 3 weeks of having to get IV Antibiotic (Anomie) Tx's trying to combat that infection. Unfortunately for her infection kept getting worse & worse despite the DAILY IV Tx's. The incision kept opening up larger & larger until finally, the only way to cure the infection was to remove the Port. Once removed, they could not just close the incision, so the wound had to be packed until it closed naturally. THAT TOOK MONTHS......it was NOT until Sept that I was able to stop packing the wound. Fortunately, they were able to find another place away from the initial incision a bit further up closer to her neck to put a new Port. (Ports make it much easier to get IV's when you have to access the veins that often).
OK, moving forward again. In Nov. '04, they found some fluid around Nance's heart in the pericardial sac. It was suspected that the fluid was cancerous (not cool since caner could very easily spread directly to the heart if this were the case). She had to have a surgery to put what they call a pericardial window in the pericardial sac. Basically, it is hole which allows the fluid to continually drain and NOT re-collect around the heart. Of course they biopsy ed the fluid at the same time. Good news: it turned out NOT to be cancer. BAD NEWS: Nance went into a coma after the surgery and her organs started shutting down. I stayed by her side day & night. Christ Hospital (only 15 minutes from our house) found a room for me when she had to be transferred into ICU (and I couldn't stay the night in her room w/her).
We were all digging for answers as to why this (coma) happened. It was NOT something expected or even a real possibility after this type of surgery. Initially, they thought maybe it (before they deemed it a coma) was a reaction to the narcotic pain meds (Morphine) they'd given her. So, they gave her something to reverse the effects of any/all narcotics; something called Narcon. She had a little bit of a response at first, but after 24 hours of giving her this, it was realized that it was not the pain meds that was causing the problem.
She was on multiple meds here at home that they were able to give her in IV form. BUT, these meds were not cancer and/or pain related. They were for the depression and anxiety she suffered from (even prior to the cancer). I started requesting that the nurses hold these meds because they were sedating and really not necessary at the moment (of course, if they were, I would NOT have requested this). The nurses were amazed I knew so much about what Nan was taking and what it did and what the side affects could be. Plus, I knew Nance's entire medical history by heart (we used to joke that I was her lap-top).
THANK GOD FOR THAT ABILITY......<patting self on back, LOL>. At one point, we had more specialists in her room (at the SAME EXACT time) during that coma than I've seen in the same roomof a Doctor's conference. AND, of course, they all had questions about her health history. BUT, LOL, the Nurses even wrote in her chart that "IF YOU HAVE ANY QUESTIONS ABOUT NANCY'S MEDICAL HISTORY, ASK TRACY. SHE KNOWS IT ALL." One of the specialist; a neurologist, at that, (and if you know anything about specialist, ESPECIALLY neurologists--this was the HIGHEST COMPLIMENT and maybe a very hard one for him to say) told me, in all honesty, that "WOW, YOU REALLY DO KNOW IT ALL WHEN IT COMES TO NANCY'S HEALTH HISTORY AND CURRENT MEDS AND CONDITIONS! He wasn't being condescending; he was being very nice & honest! (See, I told you Christ Hospital was GREAT & TRULY RESPECTED me/us & our relationship).
It was during this time (when she was coming out of the coma, which I later found out, no one really expected her to be able to pull out of, even our Family Doc who was getting all the reports from them, mainly because her major organs were shutting down) that we found out the cancer had spread to the brain and she would need Rad to that area. There were 5 lesions. Still they gave us hope. We'd do the Rad then return to chemo. BTW, we still don't know the reason for the coma; the brain lesions were NOT the cause & she didn't have any symptoms of the cancer spread either.)
Backtrack a little here again (just a month or so earlier). Nan had, had her initial bone/cat/brain MRI scans and nothing showed up. She did NOT have cancer in her bones, brain, and/or organs. Those scans are usually repeated every 3 or so months, but, with her on chemo, they wanted to see if she was responding to it first. She was. The lesions on the chest (skin) had all but cleared up w/in 6 weeks and were not even apparent anymore after 9 weeks. The breast was also becoming more normal (wasn't hard anymore). We were told she was basically in remission. THEN, they did the bone & cat scans. We got the surprise of our life.
Despite all the chemo she was receiving (weekly basis this time around), the cancer had spread to her bones. And, it wasn't like there were only a few lesions, there were over a hundred literarily from head to toe. Remember I told you her cancer was Grade 3; the most aggressive of all? They were not kidding. Thankfully, the cat scan came back clear showing no spread to ANY of the organs (and up until Nov., the MRI was clear). So, there was still hope. People have metastatic bone cancer all the time and the lesions heal. So, they changed her chemo since, while they saw a response in the actual breast & on the skin of, the chemo wasn't doing it's job because it allowed the cancer to spread to the bones. It was while she was on this 2nd chemo regimen that they found the fluid in the paracardial sac. The lesions were also reappearing on the breast skin & the breast was becoming harder again. So, the plan was to start yet another type of chemo AFTER the Paracardial Window surgery. BUT, then she went into the coma and THEN we found out the cancer had spread to the brain. PLAN 2 GOES INTO ACTION.
They don't like to do BOTH Rad & Chemo at the same time, (both take a HUGE TOLL on you) so you are given a *holiday* from one to do the other. The Rad was the most important to see if they could shrink the brain lesions. She then, after coming out of the coma, had to endure 2 weeks of DAILY (except Sat. & Sun) Rad Tx's. Up until this point, even w/all the chemo, Nan kept most of her hair. (She had super thick hair, so really, what she did lose just didn't show that much; just looked like most of us who have thin hair). But, the radiation took any and all that she had. Being the good dykes (read: butchy type here), hair just wasn't an issue w/us (then again, I truly can't understand someone who worries more about hair loss than the loss of their life). Nance didn't even want a wig....she just wore her baseball cap after it was all gone (hair) and was happy w/that. But, it was at this point that everything would start going in the downhill motion. We still held our heads high & had all the hope in the world. We didn't know what would happen next.
Written by proudlyout2
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6:20:36 PM EDT
Feeling Quiet
Hearing NOT REALLY LISTENING BUT HEARING: Melissa Etheridges "I RUN FOR LIFE"
PART 2: "JUST THE FACTS MA'M" OUR/HerSTORY (Nancy's, Mine, & Kaycee's)
8 years later (really, 7 when you include Tx time--and not from the point where she was initially Dx'ed (diagnosed Dx = Diagnosis/Diagnose) we were not even thinking about it much at all. THEN CAME HELL MONTH (actually this IS THAT month--the 2nd year anniversary which may be why I'm so damned depressed?).
In April '05, she developed some (best I can describe it, here) sore/pimple-like lesions on the same breast that she had the cancer in. After a few weeks of them spreading & NOT healing we went to our Family Doc. She said that it was probably an infection in the ducts causing this, BUT (AND SHE IS A GREAT DOC). given Nancy's history of a B/C (breast cancer) Dx in the past, SHE WAS NOT, UNDER ANY CIRCUMSTACES TAKING ANY CHANCES & ordered a mammogram AND Ultra Sound on that breast (even though Nan had just had those EXACT tests JUST 6 months prior which were ABSOLUTELY--even upon a re-examination by another radiologist AND oncologist---CLEAR & NEGATIVE OF ANY SIGNS OF CANCER). Thank God our family doc had the brains to repeat those tests. Signs of *possible* cancer (never know for sure until a biopsy is done) were found on the subsequent mamo AND ultra sound.
April & May '04 were (still are) a complete blur. First, we had to change oncologist because, not only had we moved, but also because the onc she was 1st seeing decided to leave practice & go into research (great for research; not great for us as we really did like him). Even tho we'd moved an hour away, we were able to stay w/the same practice of Onc's. Nance had seen this one female onc one time before (when her regular onc was out of town) and seemed to like her. That was who she chose out of that practice. FIRST, and this pissed (sorry for sounding like a sailor here, but I'm still HIGHLY PISSED) we had to wait for a *NEW PATIENT APPT.* which took 3 friggen weeks. First appt *seemed* OK, (tho I didn't like this office as much as I liked the one we used to go to...the people there were VERY COLD....ours in our small town was VERY warm). But, the 2nd appt is what blew it totally out of the water first for us.
We went back to the Onc after Nance had her biopsy done (just to make sure it was what it appeared to be on the mamo/ultra sound tests). This lady was so DAMNED COLD....MUCH LIKE ICE....she stood there, expressionless and w/out ANY EMPATHY AT ALL and told us *it's Stage 4* (end-stage cancer). Of course, we were both floored & had lots of questions especially since the ONLY tests she had to go on at this point was the Mamo, Ultra Sound and Biopsy She didn't have ANY body scan's (bone or cat) to find out if the cancer had spread beyond the local breast. Of course, we didn't know much about Stage 4, so we were thinking how could she say it was Stage 4 w/out those tests (our current understanding was that it had to be in DISTANT organs to be Stage 4). AND, just how does one go from Stage 1 - Stage 4 w/out any in-betweens (remember, Nance was really good about her follow-up appts which now were down to 1 year apart...still, she was very vigilent about her OWN body--she found it the first time & went right to the Doc & SHE found it the 2nd time and went to the Doc.). We didn't know until after we had found another Onc that it was considered Stage 4 because it was on the skin & the skin is considered an organ--)yes, we knew that, but of course, you don't think of it that way at the time). After this incident, I wasn't initially pushing Nance for a new Onc, BUT I DID PUSH HER TO AT LEAST GET A 2nd OPINION (but, both of us had decided we DID NOT LIKE this women). OH, and her other comment was NOT the most empathetic as well....she said "we'll do chemo and HOPE for the best." It just didn't seem to us that she was confident in her Tx's. NOT that WE DID NOT WANT HONESTY, but everyone needs to feel there is SOME hope, or at least have an empathetic doc at that time.
Finding a new Onc turned out to be close to a nightmare as well. We went for a 2nd opinion to one (of 2) oncs that were recommended by the Surgeon who did the biopsy. We liked him. Now, that I look back, I think part of the reason we liked him was because he said that Nance had Stage 3B (a little more hope, so we thought), and because he told he couldn't determine if it was Stage 4 until the other tests (Bone/Cat Scans) came back to see if there was any distant Metastases evident on the scans (just what I thought in the 1st place). Another reason we *liked him*, so we were thinking at the time, was that he didn't treat JUST the cancer w/the standard Tx's, but he treated you holistically, sometimes w/ unconventional methods. (Not sure if that's a great idea now, who knows w/cancer or any disease, really). I had asked his nurse AND receptionist if he was taking new patients; both told us yes. When he left the room, Nance & I spent nearly (that what it felt like) 45 minutes waiting for him to return and we were discussing it (switching to him) while waiting for him to return. When he came back in (I suspected he had been standing near the door listening to us...something just told me he was there & I think I even told Nance I thought he was there), the VERY FIRST thing he told us is that, I'm so busy & I heard you talking about switching to me. I am NOT taking ANY new patients at this time. I truly suspect he was discriminating against us was because he *suspected* that we were a lesbian couple (in his office were a bunch of those fundlementalist Jesus pamphlets---you know, the type that tell you the ONLY WAY to heaven is to accept Jesus as your personal savior and *BE SAVED*). HOWEVER, he ACUALLY DID US A HUGE FAVOR IN THE END!
He recommended another onc (Dr. Cody) which was coincidentally, the other onc that the Surgeon recommended to us!!!! We got an appt (ummmm, a NEW PATIENT APPT---remember the 3 weeks we had to wait even tho Nan was a patient w/in the same practice?) w/in 2 DAYS!!!!!!!!! It was at Christ Hospital here in Cincy (only telling you these names incase I ever bring them up in other conversations; you'll at least know what/who I'm talking about, :-) ) It was at the Cancer Center there, which we later found out was NOT ONLY a ONE STOP (not the best term here, but, LOL, you'll understand why I said it) SHOP!!!!!!!! We went there, and basically, by this time, I was saying we were INTERVIEWING docs. As it turned out, we LIKED HIM SO MUCH.....yes, he WAS honest, YES, he DID tell us it WAS Stage 4 (he explained why--the skin thing), BUT, he was hopeful & VERY empathetic at the same time. ALL of the Onc Nurses there were the same. While we were NEVER, EVER, NOT ONCE, given false hope, he would just tell us that, OK, I know this doesn't sound like a good prognosis, but there are Tx's and maybe we can find the one for you. The nurses also told us of ppl (and we got to meet them, so no-one was lying to us) who had survivied Stage 4 for over 8 years; one lady in particular. He ALSO TOLD US THE MOST IMPORTANT THING OF ALL: *we need to see how far this has spread BEFORE I can discuss anymore w/you about what type of prognosis YOU MIGHT have, AND WE DON'T LIKE TO RELY ON NUMBERS AS CANCER IS A PERSONAL THING; EVERYONE RESPONDS DIFFERENTLY TO CANCER ITSELF AND TO THE TX's! We DO have Tx's that we will have to try to find out if they will respond or not. We can't sit here and tell you this is a death sentence. So, really, the onc who refused us did us a HUGE FAVOR.
Sometime around our 2nd maybe 3rd appt w/Dr. Cody, he brought up a VERY HARD SUBJECT TO HEAR.....but he was empathetic about that as well. Tho we'd never told him we were a lesbian couple, he figured it out (ummmm, like DUH!, LOL---if you knew me/saw me/us you would see the BIG NEON LIGHTS that are on my forehead) and he asked us if we had a medical power of attorney. It WAS hard to hear, but, he was doing us a favor to let us know that we really did need to think about and do it. We already had a (gay male) lawyer (Scott Knox is the best)THANK GOD we did get our affairs in order when we did. I ended up having to make more of her health care decisions MUCH SOONER than I EVER DREAMED I would have to (you will read why further down).
Written by proudlyout2
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6:09:27 PM EDT
Feeling Quiet
Hearing NOT exactly listening to, but hearing in my head: Melissa Etheridge's "I RUN FOR LIFE"
PART 1: "JUST THE FACTS MA'M: OUR/HerSTORY (Nancy's, Mine & Kaycee's)
I am so glad to finally be getting around to do what I promised to do MONTHS ago! BUT, before you start to read this, I HAVE TO WARN YOU: I've been typing for 2 days working on this & this has gotten to be MUCH LONGER than I had planned....I PRAY I DON'T BORE YOU TO DEATH. If you think it'll be too much, either skim through it, don't read it (tho this does literally give a COMPLETE HerSTORY), or better yet, read it like you would a novel......in SMALL, lol, portions.
My wife & I were together 12 years. I met her in Nov. of '92 at a support/social group meeting for lesbians at a local lesbian bookstore (Crazy Ladies). Nancy walked in the room, & the rest of the night I just couldn't take my eyes of her. It truly was very funny because EVERYBODY IN THAT ROOM KNEW I'd spent the evening *staring at her*. EVERYONE THAT IS EXCEPT NANCY~~~~~LOL! After group we all went out to eat & Nance was going to go home (she had an hours drive). But, something was said about me accidentally Nairing my cat, & well, she always said she stuck around just to "hear the rest of that story." NO NEED TO GO INTO THAT NOW...LOL....if you want to know, I'll tell you another time, PRIVATELY...tehe! JUST KNOW that your WILDEST IMAGINATION is probably correct (as Nance would say "because after all, "SHE IS A BLOND"). After going out to eat, we all went to one of the lesbian clubs & all I could think about was wanting to ask her to dance. I finally had a few beers in me & got the nerve up....she said yes & I all but fainted! I walked her to her car at the end of the evening. We exchanged numbers. I AGAIN DAMNED NEAR PASSED OUT when she called me. We moved in together in March of '93. The rest, as they say, is HERstory.
In mid-late '96 (Sept. or Oct, I think) she found a lump in her own breast. Now, this very same lump had been examined before by another Surgeon just maybe 2 to no longer than 2 1/2 .yrs prior, but this surgeon (along w/a damned Mammogram) said it was *JUST* a Fibroid & NOT to worry. (What we found out later is that sometimes, Fibroids WILL turn into Cancer & all warrant close monitoring!)
The lump she felt was now bigger & (in her words) "felt different" so she had another mammogram and THANKFULLY had to go to another Surgeon (the original surgeon had left town by this time). This time, the Surgeon said, you know, it could be a Fibroid, but we really need to do a biopsy & take a closer look at it. So, they did a lumpectomy. And, well, the rest of that story is self explanatory, now, isn't it? YES, I COULD HAVE KILLED THE FIRST SURGEON FOR NOT GIVING US THIS HEADS UP AS A LOT OF WHAT CAME NEXT COULD HAVE BEEN AVOIDED (maybe--you never know what cancer will/won't do).
It was '97 before she completed the Lumpectomy, Lymphectomy (they had to take a few...15..lymph nodes from her armpit to see if it had spread there....which it had not, so if you hear me refer to it as Stage 1, that's because it was local w/in the breast ONLY & had not spread beyond that point). (NOTE: You may also here me call it Grade 3. That refers to how aggressive the particular cancer is...1 being the least, 3 the most). Her cancer was Stage 1---GOOD INITIAL PROGNOSIS, but a Grade 3, WEAKENS PROGNOSIS----but, since it was caught so early (before spreading to any *KNOWN*---(key word here, they only took out a sampling, 15 in all)---lymph nodes. She also had to undergo a total of 9 Chemo Tx's (treatments) & 41/42/43 (I think, now-memory is starting to lapse from the facts; could be 36) Rad (radiation) Tx's. The Chemo Tx's were one every 3 weeks & the Rad Tx's EVERYDAY (except Sat. & Sun.). The whole process took about 9 or 10 months, so she was finished (I think, if memory serves right) around May/June?. Things were crazy, we were going crazy w/worry of course, but she made it through ALL OF THAT LIKE A TROUPER! She really only got physically sick one time during the 9 Chemo Tx's & actually had a harder time dealing w/the *tired* affect Rad Tx can have on you (because it is in Breast area, very localized at that, no-one is quite sure if its the actually Rad Tx's that make you tired, or if it doesn't have more to do w/the fact that you have to go to the hospital EVERY SINGLE DAY; that can be very tiring on a person no matter how far youneed to travel to/from the hospital (we lived less than a mile a way...were in a VERY SMALL town & lived *IN* town (as opposed to *out in the country*.
The first 5 years were the worst for us. You constantly worry at your appointments whether or not the Onc (Oncologist) and/or subsequent tests you must endure will turn up something new. Over those 5 years, tho, we got more & more comfortable, and truly by the end of that 4th or 5th year, were hardly thinking about *IT*.
PART 2---GO TO NEXT, WHICH IS REALLY THE PREVIOUS, ENTRY
Written by proudlyout2
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Friday, December 30, 2005
11:23:51 PM EST
Feeling Surprised
Hearing none; tv on as usual
LOOKS LIKE I MADE IT OR STILL BREATHING ANYWAY
Well, my dearest Nance,
It looks like I made it through Christmas. It sure didn't feel that way, but I am still breathing.
Christmas midnight mass was VERY HARD w/out you. I cried most of the way through it. Kaycee came up to me during the sign of peace, hugged me, & asked if I was OK...she could see from the alter that I was upset.
The next day we went to my brother and SIL's & even though the kids were getting gifts & the Tree was lit, it just didn't feel like Christmas w/out you. If it weren't for Kaycee, I wouldn't have gone at all. But, I knew Kaycee wanted me to be w/her on Christmas Day and I needed to be there just for her. So, I went and at least *pretended* to be OK. I REALLY DID NEED to be there so she at least had me there for Christmas. I guess to be honest, I NEEDED HER TOO.
Well, honey, I'm sure you already know this, but Kaycee & I are going to keep *our* tradition for New Years and go down to Red River Gorge for New Years Eve and a few days afterwards. Of course we'll both be missing you being there (in body) w/us, but we'll know you are there in spirit.
We are both looking forward to a few days away from home at that beautiful place where God provides us a *Little Piece of Heaven Here On Earth." And, as you and I did/do, Kaycee just loves the cabins. I'm so glad we got to go down there a few times as a family. Kaycee has a lot of great memories too of you being there.
We were supposed to leave today, but poor Kayc came down w/the stomach virus that's going around (mom had it too this week, and w/me living w/her, I JUST PRAY REALLY REALLY REALLY HARD that I DON'T GET IT NEXT!!!! I called down at Natural Bridge/Red River Gorge, and Matthew the manager understood completly and said it would be just fine that we come down tomorrow instead of today and our deposit won't be affected at all; he'll just apply it to our first nights stay tomorrow. It's so nice that we've been down there so many times that I'm on a first name basis w/many of the people that work there. LOL, Kaycee thinks thats really funny!
Not much else happening except we're both looking forward to our trip. I write more later, my love.
Tracy
Written by proudlyout2
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Saturday, December 24, 2005
10:25:32 PM EST
Feeling Sad
Hearing None, but thinking of "I'll Have A Blue Christmas Without You"
I'm Having A Blue Christmas Without You
My Dearest Nancy,
Here it is Christmas Eve already, Nance, & I'm no better today than the day that I lost you. My first Christmas without you in 13 years is not easy. I just want to sleep through all of it. Everything we did as a family is now just a sweet memory. It hurts so damned jbad. I knew this wouldn't be easy, but honey, its much harder than I could even have dreamed. OH GOD I WISH NANCE, THAT YOU WERE STILL WITH ME. MY HEART IS ACHING FOR YOU.
I have to at least pretend that all is OK, though, so I don't ruin the holiday for our daughter. Even though she's 19, she still has the true spirit of Christmas & I really don't want that ruined because of my sadness. It isn't going to be easy, but I'll try my hardest.
All of our wonderful years spent together and all of the traditions we started together, I'll miss them all. Mostly I'll miss 2 traditions. Remember how we used to all gather under a picture of our Lord and say a prayer before opening our gifts? (1st the one your Great Aunt (I think) had commissioned for the church, but they didn't want, and then later, under the picture you painted.) We thanked Jesus together for all of the wonderful blessings he gave us that year, no matter how small. That tradition always meant so much to me & I know Kaycee too.
Another of my favorite traditions involved just you and me. You would always wake up early and then wake me up. Before Kaycee woke up (or, LOL, we had to wake her up is more like it), we'd spend an hour or two, just the two of us, with the tree lights on & Christmas music playing. We'd give each other our "special" gift & then just cuddle together on the couch. Then, we'd wake up Kaycee after we had our "special" time.
Both of these wonderful memories will always remain with me, but I sure do cry uncontrollably when I think of them. I'll truely miss them both.
Written by proudlyout2
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Friday, December 16, 2005
6:28:57 PM EST
Feeling Quiet
Hearing None
"MY BEAUTIFUL ROSE" A poem I wrote for my love
"MY Beautiful ROSE"
The last petal of My Beautiful Rose
Wilted and fell away
Now not strong enough
To be reborn
Now not strong enough to live on
My Beautiful Rose
Has passed away
Never again to bloom
Never again to bear
Those wonderful petals so red
Never again will My Beautiful Rose
Be there to keep me alive
For My Beautiful Rose
Has wilted away
Now forever gone
But I'll always keep her
My Beautiful Rose
Forever close within my heart
Never forgetting her beauty
Or the joy of My Beautiful Rose
I wrote this myself for the Love of my life.
Written by proudlyout2
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Tuesday, December 13, 2005
7:29:09 PM EST
Feeling Anxious
Hearing None. The news is on.
FIRST THINGS FIRST
BEFORE reading this, please go to my original journal at:
OUR METASTATIC BREAST CANCER JOURNEY; WALKING IT WITH A LESBIAN FAMILY
This will give you the history of this new Journal. I would have just continued writing in that one, but, I lost my Internet connection for a while, & had to take on a new screen name when I was able to get it back. This really is a very small blog; only 4 entries w/one that really counts. That would be the longest one. Then, tune into this one for updates. I'll TRY to write often, but can't promise.
I'll write an update since Nov. of 2004 as soon as I can. SO MUCH has happened, & I'll write "JUST THE FACTS MA'M" ASAP. WARNING: It will be LONG.
Written by proudlyout2
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