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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

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…

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.

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.

Today’s Thoughts…

April 19, 2014//Frozen. PET scan is scheduled for Monday morning, two days from now. Easter is tomorrow. Having lots of trouble… it’s as though that old coping mechanism has kicked back in… as if I’ve frozen the future, refusing to acknowledge it exists. I don’t want to start anything I can’t wrap up in the next day, because I don’t know what my reality will look like in a couple days. My entire life could be turned upside down. Again.

God I have no words to express how badly I do not want to go through that again.

Sometimes I wonder which is worse, having cancer or the mental torture a cancer survivor goes through for the rest of her life, living in fear that every ache, pain, unexplained feeling could be cancer.  So different than someone who is merely fearful or obsessed or paranoid about getting cancer? Because for us, chances are that it really, truly, absolutely, very likely, could be cancer.

I will likely wait to post again until later next week, after I receive and digest the results. Until then, join me, pray.

Today’s Thoughts…

April 5, 2014// Happy Birthday To Me. I am 47 today.

I was 43 when I was diagnosed with cancer. In what was I’m sure a coping mechanism, as soon as I heard the words, ‘You have cancer’, I took away my future. It wasn’t so much that I thought for sure that I would die; rather I refused to think about it at all. I refused to think in terms of anything past two weeks. The world beyond that simply did not exist. At the same time, that little part of me that wasn’t living in the two-week bubble had very specific thoughts about 47. No idea why, but that seemed like the line to cross. Either I would make it to 47 or I wouldn’t. Well here I am.

That little white post card, folded in half and sealed, came in the mail yesterday. The one from my GYN/Oncologist saying my recent pap smear was ‘within normal limits’. I didn’t feel the rush of relief this time like I usually do. Likely due to the PET scan scheduled this coming week. I don’t really have specific symptoms indicating the cancer has reappeared or spread, but I think it’s natural to be concerned. Or completely stressed out, freaked out, a nervous damn wreck. My thoughts are around my bladder. Don’t know why.

I finally had my nephrostomy exchanged yesterday. I suffer from a degree of Post Traumatic Stress Disorder, as I’m sure most women who’ve been through this do. Mine manifests itself  primarily in my inability to lay flat.  Odd as it sounds, it seems lying flat, particularly on an exam or x-ray table, seems to bring an unreasonable response – all the fear and anxiety I had during cancer treatment comes flooding back. Probably some deep psychological connection to being secured on the table during radiation therapy. Regardless, I tend to have full blown panic attacks in that position.  Because of this, I’ve had to be sedated for the tri- monthly tube exchanges.

Major milestone for me – I climbed up on the table, flipped over on my tummy, and took it like a trooper while they pulled the old kidney tube and inserted the new one. Ok, I couldn’t lay exactly flat; I lost so much flexibility from all the radiation that my body just doesn’t stretch like that anymore. I was more propped on one elbow at a slight angle to my side, but the point is I did it completely awake with no anesthesia or pain meds at all. And remained calm. Of course this was the time they had trouble getting it out. Seems it knotted up at the end. Took some time and much manipulation to get it unknotted – the tech finally just pulled. Ooouchhhy! But the new one slipped right in and I got up and walked away. Very proud of myself.

Trying hard to enjoy my birthday, concentrate on the weather that is finally not dreary and cold, and not think about the PET scan looming in the near future.

Today’s Thoughts….

March 28, 2014// It’s that time again.  I’ve made my round of doctor’s appointments this week.  I still see four doctors regularly – Urology and Pain Management every three months; GYN/Oncology every six months; and I see an Internal Medicine Specialist as my PCP every six months or whenever I need to.  This time around I saw all four.  I’m very frustrated by the urology office.  Among other lasting damages from the cancer, I only have one functioning kidney, and it does not drain properly.  To accommodate that, I have a nephrostomy.  This is a tube that has been surgically inserted into my kidney, comes through a hole in my back, runs down my leg to a collection bag.  Hey, saves on toilet paper, right?  There are many physical limitations to a nephrostomy, but it’s better than the alternative.  Unfortunately since it’s a plastic/rubber tube, it has to be changed every three months. For the rest of my life. But the frustrating part is the urologist’s office.  They have to schedule the procedure at the hospital each time, and each time it’s like pulling teeth.  I sometimes wonder if they don’t take my case seriously since they were not involved in the actual treatment of my cancer.  I lived in Florida when I was diagnosed and treated, only moved back to Virginia when treatment was complete (out of work on disability, had to move home to make ends meet.)  Anyhow, my appointment with the urologist was Monday, it’s Friday, and I still haven’t heard from them to schedule the procedure.  This happens every time.  Then when I finally have the procedure done, the staff at the hospital chastises me because the change is overdue. Ugghh!

But perhaps this frustration is there for a reason.  It gives me something else to focus on instead of the real anxiety, the oncology visit.  It’s been a little over three years since I got that first ‘all clear’, and I have had no symptoms that would suggest it has returned or spread to another area. But I don’t think the fear ever really goes away. Thankfully this time the doctor has suggested running another PET scan (basically a head to toe scan that should reveal any cancerous cells in the body.  Nothing is absolute, but this is awfully close.)  I have not had one run in two years. My original insurance denied the procedure as not medically necessary.  Then I was without insurance for a while.  I certainly could not pay for something like that.   But Medicare has finally kicked in and the doctor was pretty sure that Medicare would cover it. So, before too long I should have another PET scan done. First I have to get the results from the pap smear they did in the office yesterday.  Once it comes back all clear, they will schedule the PET scan.  And once the PET scan comes back negative, I may  be able to really relax, to accept the fact that the cancer is gone.  I will always have the physical limitations that resulted from the chemo, radiation, and the cancer it’s self, but I think a negative PET scan would do wonders for my mental state.  We’ll see.  Once step at a time.

(queen of the run-on, huh?  can you tell i wrote this at 2:30 in the am?)

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