Final Post

February 17, 2015// When i started this blog I needed desperately to gather my thoughts, to sort though all that had happened to me, and to learn to accept this new version of my life. In the beginning I needed the companionship of other cancer survivors, to try to validate all I was feeling. I needed to get the thoughts that continued to roll around in my head under control.

Mission accomplished. January 28, 2015 marked four years cancer free. Perhaps the most notable change is that many, many days go by at a time that the word ‘cancer’ does not enter my conversation – or even my mind. Several months ago a message was put on my heart, and it changed everything for me.

The cancer, the changes to my life, everything I have lost, was not a punishment. It was a gift. I worked hard, sacrificed much to support and raise my children as a single parent when my marriage went bad when I was only 23. My children are now grown, but debt remains. At 43, I was looking at at least twenty to thirty more years of work. Retirement would have likely never been an option for me. Instead, I am now about to turn 48, been retired (on disability) for the last five years, and am free to enjoy my days as I please. Who knew cancer could be a blessing?

I was stage IV. It was bad. It could still come back at any time, that will be my reality for the rest of my life. But I’m still here, and will be for a long time to come. But this blog will not. It’s time to wrap it up, to clear it out and use the space to move forward.

Thank you to everyone who reached out to me, who shared their experiences and well wishes. My thoughts and prayers will remain with those of you who are still fighting, I will always hold a tender thought for the few who did not win the battle.

Hugs,

Lorraine

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Today’s Thoughts….

August 28, 2014 // Four years ago today I went to the GYN doctor. Life was never the same again.

I sometimes wonder how much a person is able to bare. How much the human spirit was designed to handle. Every day of the last four years has been one individual day at a time, nothing before or after it. But on the rare occasions I sit and think over all of them together, I feel as if I’ve been though a nightmare. The type that when you wake up, it is not clear if you are really awake or simply dreaming that you woke, and the bad things are still there, hovering, waiting to attack.

Four years later and I am still alive. That in its self makes me much more fortunate than many. I am grateful.

My body is damaged in ways that will never heal, I will never be ‘normal’ again. I will never be the person I was before. I will never have the life I had before. The future I’d hoped for was stripped away. The future was stripped away. 

Slowly as time passes I ease up a bit, allow myself to think further ahead than the two week limit I put on myself that day four years ago. 

On the rare occasions I think of it all, I wonder how I survived it. I understand physically. I have the scars and other lasting damage to testify to why I am still here.  I wonder how I am still a (relatively) functional, lucid person. How I didn’t break, depart, check out completely. 

Today I should celebrate what some would refer to as my ‘Cancerversary’. But I am in limbo. There is another spot. Too deeply buried behind organs and tissue so damaged by previous radiation to risk trying to biopsy. I may never know for sure. So I wait. If the area grows we assume it has returned and resume treatment. If it does not grow, it hangs over me forever, the bad thing, hovering, waiting to attack.

Thankfully I don’t allow myself to think these thoughts often. I am grateful.

Today’s Thoughts…

July 24, 2014// Finally, an answer. Even though the answer is that we have no answer, I am relieved. I’ve been waiting since the PET scan this past April to find out if the area that lit up was a metastasis, or a false positive. A series of events, including an inpatient stay, delayed the follow up CT scan until earlier this month.

The initial CT report showed nothing to suggest the presence of cancer. My oncologist was not comfortable with this results, since the CT was preformed without contrast for various reasons. The films were sent back to the Interventional Radiologists at the hospital, asking them to review again and consider doing a needle biopsy. Three out of the four docs said no immediately. The fourth finally responded saying the area was too deep, so little tissue present, and so filled with fluid that it would not be safe – he would not do it. My ears pick up on the fact that the area is filled with fluid, since that is one of the things known to produce a false negative PET results.

So at this point we still don’t know if the area in question is cancer returned or not. But the decision was finally made, since there aren’t many other choices, to simply wait and see. Another CT scan in three months, this time signing waivers to use contrast**, and we’ll see what that shows. Hopefully nothing.

Meanwhile, I feel like a weight has been lifted. Back to life as normal, or as normal as my life ever is, with the occasional prayer to remain cancer free.

 

**There is a hesitancy to use contrast in someone with only one kidney. The dye is expelled through the kidneys, and failure to do so can cause kidney failure.

Today’s Thoughts…

July 7, 2014//CT scan today, finally. The plan was to get a CT with contrast to get a better look at the area that lit up on the PET scan a couple months ago, since the area is too deep to biopsy. Unfortunately, they do not give contrast to persons with one kidney. Their explanation was that the dye is evacuated through the kidneys, and it can do bad things if it remains in the body for too long. With only one kidney, the chances of it lingering is too great.

Whatever. What it means to me is that the quality of information we were hoping to get is now seriously decreased. I’m trying to find out if the cancer has come back.

Time is passing. If it is back anything could be happening in there as time is ticking away. Now the wait is on for my doctor to call to set up an appointment to come in and discuss the results. At this rate it will be a week for the call then two or three weeks for the appointment.

When the doctor first told me there was a questionable spot on the PET scan, I’d asked if we needed to act now or possibly wait three months and repeat the PET scan. He said no, if it did turn out to be cancer, we’d want to begin treatment right away. It’s been nearly three months now. What’s the difference?

Today’s Thoughts…

June 17, 2014// I just realized how long it’s been since I’ve entered a post. I guess I’ve been having trouble focusing lately, more than normal. I just got the results of another urine culture, second one since I got out of the hospital, and I still have a resistant bacterial infection in my kidney. It’s difficult to treat because I’m allergic to most antibiotics. The culture showed only two antibiotics that would be effective against it, at least only two that are available in pill form. It’s documented that I am allergic to one of them. A prescription is waiting at the pharmacy for me for the other drug. I’m nervous to take it because everything I read says if you are allergic to the one drug, not to take this either. But the doctor thinks it’s worth the risk. If I’m not able to take this one, I’ll have to go back to receiving medication by IV again. If not inpatient, then drive to an infusion center every day to receive it. Scared to try the new pills but don’t want the alternative.  Some times this whole thing really sucks.

My oncologist’s nurse finally returned my call today, I’ve left messages over the last week. She said what I already knew, they want to schedule a CT with contrast to get a better look at the lesion that lit up on the PET scan.  They’ve been watching the lab results from the blood my PCP has drawn over the last couple weeks, making sure my kidney function is stable again. Who knows with yet another infection. But as soon as they think that’s ok they will schedule the CT. A little concerned since I had the PET scan several weeks ago now.  My pain level has increased and I’ve been feeling all kinds of new pains and sensations.  Likely because the weather is warm now and I’ve been much more active.  My mind, of course, keeps telling me it’s because the cancer has grown like wildfire and has taken over the whole region again.

Prayer is that it was not cancer that lit up the PET scan, that they will be unable to find anything on the CT scan. If I can’t have that, then second choice would be that at least has not changed.

I’ve been thinking a lot about having chemo and the heat of the summer.  Because of all the changes I’ve gone through from the last treatment, I cannot tolerate heat at all. I’m just imagining trying to wear a wig or other head cover, with sweat rolling down my face.  I don’t think I could do it. But walking around bald isn’t really an option either.  UUGGGGHHH!!

Today’s Thoughts…

May 24, 2014// Biopsy has been delayed for a short while, just discharged from hospital for a kidney infection gone bad.  Because of my nephrostomy situation, I don’t necessarily have any symptoms of infection until I am very sick.  This time around I finally went to the ER for vomiting.  Turns out I had a major kidney infection that had gone into my blood stream, sepsis.  To complicate matters, I am allergic to most antibiotics, they only things I can tolerate that are strong enough to treat the kidney are not available in oral/pill form.  That means a week or more inpatient, hooked up to an IV to receive the needed medication.  No fun.

Trying to use my time wisely, I tried to get the biopsy set up and done while I was there.  The team that would do the requested ultrasound guided biopsy came back and said the area in question was too deep, they would not be able to biopsy.  Their suggestion instead is a series of CT scans with various contrasts, to try to get the best images possible to correctly identify the lesion.  And they would not do that at the time because my kidney has to be in proper working order to evacuate the contrasts they want to pump into me…  round and round in a circle.  Guess I will contact my oncologist again this coming week to see when they will schedule the CTs.

I’d really like to just ignore the whole thing and pretend like it’s not there, but I know where that leads.  Better to find out now, if it’s possible to really find out, and get it taken care of.  I’m really not wanting more chemo.  Trying to look on the bright side though.   At least it hasn’t reappeared in my lung or some unrelated spot like that.  That would be a whole other ball of wax.  And, this little 2 centimeter-ish spot is NOTHING compared to the massive cancer I’ve already fought off, so this should be cake, right?

Today’s Thoughts…

May 7, 2014//Just got back from doctor’s appointment.  Seems a small, 2.2 centimeter, area lit up pretty strong on the PET scan. Chances are good it is cancer. They want to attempt a biopsy sometime in the next week or so to try to confirm before deciding on treatment.  It is in an awkward position, deep on the pelvic wall – buried in necrotic tissue, adhesions, and scar tissue from previous radiation therapy – so may not be able to reach it but want to try.  The miracle would be for the biopsy to come back negative, not cancer.  But more likely, if it confirms cancer, or if they are unable to biopsy, I’ll go back to the doctor in two weeks to discuss next steps.  Likely chemo.

To The Best of My Memory…

I think I started radiation on a Tuesday and received chemo on Thursday of each week, so it was after my third radiation treatment that I got back in the car, took a quick ride down the street and over a couple blocks to the GYN/Oncology office where I would receive chemotherapy.

Before I began treatment I felt pretty good about the radiation therapy, but was terrified of chemo. Can’t say exactly what I was so afraid of, but it was real and deep fear.

I don’t remember anything about that first visit until I was sitting in the chair in the chemo room. A fair sized room with six large recliners on each side of the room, facing the front of the room, with an isle down the middle. There was a large flat screen TV high on the wall in front of us and the nurses’ desk and supply room behind us. Next to each chair were a small table, IV poll, and a trashcan. I’d selected the last chair in the row on the right on purpose – I wanted to be able to see everyone else in front of me, but didn’t want any of the other patients to be able to watch me. Shortly after I sat down, stashed my purse under the table and such, another woman arrived and sat in the chair across the row from me. The nurses introduced us to the other patients and announced that we would be joining them for a few weeks. It was the other woman’s first chemo treatment also.

Starting an IV soon became something I would have nightmares about. Really, I had horrible dreams at night about this. Sometimes I still do. I’ve always been thin and therefore my veins are a bit thin also, making me a difficult stick. Add to that the fact that I was extremely ill and …. well it was a mad hunt each week to find a vein that could be catheterized with the IV needle.  My hands are still a wreck. If you look at them today, you would think I have tons of freckles on the tops of both hands. If you run your fingers across them you will feel little lumps under each ‘freckle’. These are actually all spots the nurses tried (and usually failed) to start IVs. It really hurt then and is still tender now.

I remember sitting quietly, watching and listening to all that was going on around me. Once my IV was in place and a bag of saline was slowly dripping into my arm the nurse moved her cart to the woman in the chair next to me. Her IV was in easily inserted on the first try. The nurse moved back to me. She quickly went down a checklist of side effects I could experience from the specific chemotherapy drug I was about to receive. I think she’d gone over it all in more detail when I’d had the first meeting with her, but I hadn’t listened too closely then either. She slipped the bag over the hook on the IV poll, clicked open a port on the tubing of my IV and in a moment it was connected and dripping into my arm. I think I held my breath for the first couple of minutes, waiting for some violent reaction. None came, thank God. Satisfied I was going to handle the drug ok, the nurse moved on to repeat the same process with my neighbor across the isle. She also handled the initial drops of poison without any problem. The room fell quiet, each patient lost in their own little world. Some read. Others knitted or worked puzzle books they’d brought with them. The nurse started a DVD on the big screen in the front of the room. No clue what the movie was. Something with Steve Martin – but not the light comedy you’d expect from him. I was nicely distracted, getting engrossed in the movie when the women next to me started moving around. I tried to glance over without appearing too nosey but soon realized the woman was waiving her arm in the air and appeared in great distress. I tried to call out for assistance but had trouble finding my voice. As the nurse hurried over to her I sank back in my chair, petrified. I was watching the very thing I had been so afraid would happen to me.

To The Best of My Memory…

I have fairly clear memory of my first day of radiation and chemotherapy, or at least clear individual memories. I can picture walking into the facility where I would have radiation therapy as clear as if I were doing it right now. Signing in at the window, making fake bright chitchat with the girl checking me in, her incredibly long straight black hair. The admission wristband she wrapped around my already thin arm; and realizing it meant that when I checked in each day, I was considered inpatient for the time I was there. I now understand they did that so it would be an easy transition if anything went wrong and they needed to transfer me to other areas of the hospital. I remember sitting in the waiting room, looking around, trying to not stare or be too obvious while sizing up the other patients. I think I was trying to judge how much discomfort they were in – a predictor of what I was in for. I rememeber thinking how lucky they all were, they each had someone with them.  It was fairly easy to guess the relationships. Daughters there to support their elderly mothers, middle age husbands who were the patients – trying to act brave for the wives clinging to their arms. The other husbands looking horrified as their wives were called in for their treatments. Even the few who arrived by van and were wheeled in by wheel chair by attendants looked comforted by the attention they received from them. I remember thinking they were lucky, then rationalizing that by being alone I was allowed to be completely selfish, could concentrate completely on myself without having to worry if anyone else was ok or upset or handling it well.

I don’t remember much about the actual first treatment, lying on the table, the machine moving around me. I do remember walking out of the building, across the street to the parking lot and getting into my car. I stumbled a bit crossing the street, just the slightest miss-step. I remember wondering if anyone had seen me. Once in the car I took inventory. Just sat there for minute thinking up and down each part of my body. No real discomfort. I remember a few slight feelings that would increase as time went on but were no big deal at the time. Hard to put into words exactly. The descriptors that come to mind are ‘thick’, ‘dry’, ‘vibrating’. I don’t expect that to make any sense. I also remember thinking that it wasn’t bad at all, thinking, “I got this.” Ha.

Today’s Thoughts…

April 24, 2014//When the doctor scheduled the PET scan he also scheduled my next regular appointment with him in six months.  He said once the results of the PET came in he would call and either tell me all is fine and he’d see me in September, or schedule an earlier appointment to come in to discuss the positive results and the what/when/how of treatment.

His nurse called this afternoon.  Scheduled an appointment for me on May 7th. NOT the outcome I’d hoped for.

PET scans do have a fairly significant record of giving false positive results, so nothing is for sure yet.  Likely, but not certain. Two weeks of prayer and trying to stay positive.

I believe in the power of prayer.  God hears my voice.  When many voices are lifted to him in union, He cannot dismiss them. All prayers are welcome and appreciated.

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