“C” Update

As some of you already know, I had a 3-month follow up with my Oncologist this week. It wasn’t the best news. My CA125 numbers were going down and the treatment appeared to be working until my previous (and last) infusion.The number jumped and the nodes increased in size (from .4mm to .7mm).  Dr said this indicates the cancer cells developed a resistance.  I wasn’t totally unprepared for this news.  The last few weeks I’ve tired more easily. Been able to do less and ate less. Even forwarned, I wasn’t happy with the news. Doc says we are not out of options by a long shot.  He will start me on a different medicine to be infused every 2 weeks. He also took blood samples for a genomic study of the cancer which will help us decide which of the 2 trial programs would work best for me.

Interesting side note, I thought a cancer tumour was cancer throughout. They are not. The tumour will also encapsulate good (normal) cells. We’re having to do a blood draw and study because my tumor was like 90% good cells.  They need 20% cancer cells to do the genomic study on the tumor!  Another interesting note, they keep all the tissue removed during the surgery for 10 years!  If the tumour had had more cancer cells they could have used it.

Cancer Update

You may have noticed me wearing a new wig the past few posts. It’s not a wig but my real hair:

I’ve always had curly hair; lots of body but it’s grown back downright kinky.  It’s about 1.5″ long and so tightly curled that I tell everyone I opted for a ’80s Afro.

I  looked like on of those black and white cats. You know, white with a few black spots here and there.  I colored it after the last trip to the Oncologist who told me my numbers were way up and we had to check this out.  My first thought was “I should dye my hair now before it all falls out again.”

So we did a CT scan; then a biopsy.  I have two spots less than 1/2″ wide that turned out to be swollen lymph glands. The biopsy showed ovarian cancer cells.

Doc offered me two options but because I really don’t want to be running South Dakota roads during the winter (think snow, ice, blizzards), I’m going with the standard treatment.  That consists of 3 infusions, each 3 weeks apart which I can do at the hospital 15 minutes away. (Even that trip is iffy during some of our weather.)

That brings us to today’ s post ” Sweater Knit with Front Placket”.  I remember too well the ordeal of dressing warmly to go outside then having to undress when I got to that meat-locker they call a medical clinic.  I have a port which makes any IV’s easy (nurse says it does many good things) but is hard to get to when I have long johns, pull-over sweaters and coat on-top. The port is located about 1.5″ below my clavicle and about the same distance from my sternum. During the other 3 seasons, it isn’t an issue because I have a supply of  button-up blouses and tank-like tops. I decided it shouldn’t be an issue this winter either and immediately began making heavier knits with front openings. Ta Da!:

To read more CLICK HERE

3 Months Post Chem

It has been 3 months since my last chemo treatment.  As you can see my hair is coming in more and more.  Initially it was a gleaming white. 2 months later, there are darker hairs and some yellow/blond mixed in.  It is a soft as a downy chick.  Still have a few hairs that like to stick up like crazy antennae.

Otherwise, I am walking further and yes feeling better. The weight loss–goes poorly. But at least I am not gaining any let alone at the spectacular rate I acquired the extra pounds.

In some ways I am better than before cancer/chemo/surgery. Like bowl movements are not painful.  I am not requiring 2-4 hours naps every day. However, I am not 100%; I am not as in good of shape this September as I was September 2018.  That sounds like whining and I don’t mean to whine. I’m not expecting much more than where I am now — my doctors have been very explicit and caution me to the opposite.  Today, I am very happy to share, I have combable hair.!

I am under Surveillance

Had my last infusion a month ago.   My followup last week. Blood test, CT scan, internal exam.  All say the same thing “No Cancer Here”  Of course I haven’t officially beat cancer but I am “under surveillance”.  Which means every 3 months I will have another round of blood work, a CT scan and an internal exam.  For then next 2 years.  Not sure what the schedule is for the following 3.

I am having a genomic scan done. Won’t get the results for several weeks. In the meantime, I’m just grateful  to all the folks that “prayed me through.”

 

On the Cancer Front

With so many praying for me, I felt an update was due.  I visited my oncologist on Monday, Apr 30. He was very pleased with my healing/recovery and that the biopsy of the “stuff” removed had shown that the cancer had been dead and nearly all of it removed from within the tumour membranes.  Even my GYN said this was remarkable, practically unheard of.  Naturally, I credit your prayers. My body did the work, but I’m sure your prayers were the push needed.

I was feeling really good at that Apr 30 visit.  Still not like before but much better than since Dec.  The oncologist said that’s what he wanted but it was time to start the next round of chemo.  We’re going to clean up all the microscopic stuff he could have missed. He scheduled and I received my First Infusion of the Second Round of Chemo treatments Friday, May 3.

Friday was mostly boring. Saturday and Sunday I was sewing.  Have a cute knit top to share but need pics. Which I won’t have for several days as the chemo hit me hard Sunday about 4.  I ache. I am weak. But I am not as bad as any of the chemo infusions in the first round.  I’m taking it easy for a few days. As soon as I can, I’ll get those pics. I want to share my cute top.

C: One Week Post-Op

I could not help being anxious leading up to my hyster. I was constantly turning to my affirmations and kept physically busy to calm myself. We drove to Sioux Falls the day before.

I registered in the hospital the next morning at 0830AM. They started prepping me right away. Something I did not expect is that at least 2 nurses were attending me all the time.  The anesthesiologist and his assistant both talked with me. I am not sure what they put in my medi-port but I was strangely calm and observant when rolled down the hallways and into the meat locker they called surgical ward and suite.  No kidding it was cold. The 5 nurses waiting for me were well aware of the cold and immediately started wrapping me in blankets.  Well, immediately after helping me from gurney to operating table. I wonder now how it was that I was able to get off the gurney, reverse direction and settle myself onto the table. Perhaps, I only imagined I was myself making the move. I remember a nurse offering me a third warm blanket, which I accepted, and then I awoke not in ICU or Recovery but the private hospital suite I would stay in until discharged. As far as I personally am concerned, I easily experienced a major operation.

I was way out of it, so my  doctor/surgeon, talked in-depth with DH.  The doc may have even talked with me. I have no recollection though as I slept through most of that day and night. Sleep was the only way to ignore the NG and Foley tubes. When my doctor came round the next morning I begged to be relieved of those tubes.  The NG was especially aggravating as it seemed to curve and press against my throat causing pain (minor) and coughing. The doc and I talked at some length.  I got the feeling he was as pleased with himself as he was with my recovery. Apparently the chemo really did a good job for me. The tumors were shrunk to practically nothing.  Also considerably shrunk were the pieces of me he intended to remove (ovaries, fallopian tubes, uterus and cervix).  Being shrunk all these things were easy to scoop up and out.  He was challenged however by the membranes which had held the tumors.  They lay against my organs and tried to meld with them.  Doc had been concerned that the membranes had infiltrated my tissues and he would have to remove some of my bowel, stomach and other places where the membranes lay. He worked carefully and was able to separate the membranes from my tissues.  I could tell he was especially pleased when he said after removing the membranes, it was obvious that all my tissues were healthy.  He did a double-check of his work by inflating my stomach and bowel.  He was making sure he had not caused any punctures.

Then we set goals so I could leave the hospital.  I had to be up and walking about; eating without vomiting i.e naseau control; pain had to be under control; and funnily enough I had to be passing gas.  First time in my life pharting was a good thing.

This was not to be an instant success. They provided a special wheelchair to walk behind but this 2nd day I couldn’t go far.  They gave me good drugs for the pain but I was leery of the first drug, Valium.  Several people in my extended family have found themselves addicted. Not an experience I want for myself.  The nurses had a list of meds we could work with.  By the 3rd morning we had settled on a combination of Tramadol and a horse tablet sized (600mg) ibuprofen.  I thought I was ready to go home.

Nope the doc said I was ready to work on food tolerance.  He prescribed a soft diet and to encourage me said if I held down breakfast and lunch, he would discharge me that evening, Wednesday.  He said I was recovering ahead well above schedule and was confident I would be going home soon.  He also said he liked to hear patients wanting to go home.  He said patients that want to go home heal the fastest. Well it was not to be.  I held down cream of wheat and milk for about an hour before upchucking into The Hulk’s condom.  Seriously, they gave me a huge green tube that looked amazingly like a condom. DH and I figured either the Jolly Green Giant or The Hulk must have modeled for it.  It worked really well.  There was a stiff plastic circle on the open end which totally covered my mouth and nose.  Much better than puking in my bed.  From then on, I kept on of those condoms handy.  I like tools that have multiple uses.

DH needed to do some things at home so he departed. Doc also decided to run more blood work on me. With the medi-port it is really easy and not painful but not a simple procedure.  The medi-port has to be flushed before hand, blood drawn, then flushed after the blood draw and a dose of heparin pushed into the port. From that work up, doc decided I needed 2 units of blood (my hemoglobin was low) and more potassium. The saline kept dripping, I assume because the elderly (I’m in that category now), tend to be dehydrated. Also, I pointed out to on of the nurses how dehydrated my arms appeared.

I thought I would be alone on the 4th day, Thursday. But I had regular interactions with the nurses and a number of support personnel from the hospital.  The Chaplin came by and offered to pray for me.  Naturally I said yes and also told her about all of you worldwide offering your own prayers.  Her prayer included a thank you for YOU, my readers, to which I whole heartedly agreed. They have a special discharge staff.  They came by the same day and were totally encouraging.  They said I was doing so good I would probably be going home on Thursday. I was concerned about that because my ride, DH, had taken the car and left.  You know what?  They said it wasnt a problem.  They would find someone who would make the 3 hour drive to get me home.

I hated bothering the nurses but all the water and juice I was drinking meant I needed frequent help getting to the potty. I tried to hold it for the next med/vitals visit but that caused me to urinate in my bed every time I coughed, sneezed or laughed. So I called them frequently.  Loved the way the shift nurse would introduce the next shift nurse.  They did their turn over in front of me and encouraged my comments.  I felt like I was being included in my own treatment. I can tell you that in the past, at other hospitals, I felt like a mushroom.  You know where they keep you in the dark and feed you bull___t.  BTW it is true that they wake you to give you a sleeping pill; only mine were pain pills given when I wasnt experiencing pain but deep sleep. They said the objective was to get ahead of the pain because pain itself would slow my healing.  Curiously they did not offer compression aka abdominal support.  They first nurse I talked with didn’t understand what I was asking about.  She made the effort to immediately find out and get an “abdominal support” for me. Every nurse thereafter made sure I had it on and tight when taking my walk behind the wheelchair. I appreciated that because the compression really made it easier for me to stand straight and yes walk without pain.  I quickly got to the point of rapidly “circling the quad” which was a very large nurses station.  In no time, I was picking up speed and walking confidently.  With compression, I was able to stand up straight and I didn’t have any pain when it was time to return to my bed.

The next morning, Thursday, I started the soft diet again.  I made a point of eating a little of everything but stopped as soon as I was near full. I didn’t want to use those green tubes. I wanted to go home. Meal times surprised me.  I was expecting a tray of whatever the kitchen cooked and a quick departure of staff. Not at all my actual experience.  They would come in and tell me what was being served.  There was always a selection of 3-5 entres, same for side dishes and liquids. Plus the staff was friendly greeting me like an old friend and exchanging chatter. Thinking back, their pleasant company encouraged my appetite and I ate better. I also held it down.

I’ve been in the hospital several times in my life.  Never has the entire staff been so attentive and personal.  I don’t know how Avera McKennon managed  it, but from highest to most mundane staff members know and act like they are an important part of the healing process and the hospital experience. And to me, everyone one them was exceptionally kind and helpful; responsible for my excellent experience.

Friday instead of my doc, his PA visited me. After about 15 minutes, I asked if she was letting me go home.  I was totally ecstatic when she said yes. She said I was well in advance of schedule. Keeping me in the hospital would only delay my healing.   I called DH immediately.  Then continued my discharge briefing.  The nurses started the discharge activities almost immediately.  It wasn’t hurried because DH was making a 3hr trip to pick me up.  I was surprised at how much we needed to do.

At 12:30, lunch time, they packed me up with all my stuff including the flowers DH sent me on, put me in a wheel chair and I left the hospital.  The drive home took more than 3 hours because the PA told me to stop every 45 minutes, get out of the car and walk around. She was concerned with preventing blood clots. Well blood clots have been an issue in my extended family so I was happy to do something that could prevent them.

Saturday, DH retrieved my prescriptions which had been faxed to the local pharmacy.  I have the pain pill, the horse table sized ibuprofen and stool softeners. Oh and I must have a shot everyday to prevent blood clots. I think  the shot made DH and I into a comedy team of what not to do when one of you (me) is a wuss about pain. The activities of the first shot was hilarious. To minimize pain, I don’t look and don’t want to be warned.  DH is just the opposite and insisted upon a blow-by-blow recounting and my consent at each step.  It’s a miracle I even got that shot as he couldn’t at first remove the cap from the syringe. 2nd shot/day was only slightly better. 3rd day/shot I impressed upon him that I wanted no chatter no warning.  I wanted him to pinch and stick before I knew what was going on.  Ah, at last a shot that wasn’t dreadful

Later after the first shot, I noted to DH how odd it was that I was seated roughly in the same position as when I was in the hospital, watching roughly the same TV programs but there I had been some what miserable.  Here at home, with him by my side with little conversation, the same circumstances produced happiness and contentment.

And so I conclude this was a successful experience.

Day of Hyster

Monday March 18th is my big day. I should be in surgery by the time you read this. I am having a total hysterectomy,  in addition to removing any remaining cancer and patching up any of my innards that were invaded by cancer. I wont know for sure what all is done until I awake.

I will be in the hospital for 3-7 days. Then in my bed another 7. I will not be posting for at least a week.  Please keep me in your prayers.

Cancer Pants

A number of people asked if I really want to fit pants right now, since my body and fit will probably change again in the near future. Truth is, no one can guarantee me what my shape will be in 6 months or even a year.  Some hyster patients do regain their previous figures, most do not. Most simply cope with the expanded girth primarily in the stomach/waist region. So fitting pants now may not be for short term wearing. The fit now could be the fit I need for months, years.  Then again my figure could change some more in which case, you are right, I will need to refit pants.

So why do it now? Well this is the way my pants look now:

In the side view, the waist is pulled up well above my natural waist because it hurts to have the elastic placed across my waist and tummy.

Thank you again for suggestions and especially prayers. I’m making it through this because you keep cheering me on.

Update 3/8 Activity…

…which began Wednesday 3/6 with lots of blood being drawn and then a CT scan both with and without contrast.  I anxiously awaited the results on Friday. My blood pressure was up. Still within expected ranges, but up.  I am sure it dropped rapidly as the Dr gave me good news.  All my labs were normal. Magnesium, potassium, white cell count, all normal except the tumor markers. Normal is 35. Mine had dropped to 17!  Dr once again said this is unheard of.  I started at over 3000, dropped to 812, then 64.9 and this week 17.

The CT scan was equally encouraging. The tumors were vastly shrunk. Not only that but they often leave behind a sack. The CT is not showing these empty sacks.  (Dr used a medical word which I don’t remember)

Initially he was anticipating damage to liver, stomach and bowel.  In that first meeting, he was anticipating a bowel resectioning and did not rule out a stoma. Now he says liver and stomach look fine and it is unlikely that he will need to resection the bowel.  He did warn me that once he gets inside he may see scarring or damage not visible in the CT and he will take action.

He says my cancer responded to the chemo treatment very well.  I think it was chemo with a prayer-push.  I thank all of you again for your prayers and hope you continue them.  I am convinced that prayer works.

Before leaving today, I signed permission and understanding papers.   We are planning the operation for Mar 18 or 19th. The remaining tumors will be removed. Any swollen lymph nodes removed and tested. All the lady parts will be removed too; and because there was so much cancer up high on the fat layer next to the lungs,  he will be removing some of that fat too.

Four weeks later, I will begin the last 3 chemo treatments and am expected to go in remission.

So considering how much tissue he is taking out (tumor remainders, fat by the lungs, ovaries, fallopian tubes, uterus, cervix), how much weight do you think I will lose?

After Chemo 1-3

I am making this post a little sooner in the 1-3 chemo process i.e. well before the next chemo, should there be one.  My oncologist scheduled blood work and a CT scan early so that should I require a 4th chemo, the 3 week schedule will not be interrupted.  Apparently, he expects the best results with my treatment if it takes place precisely 3 weeks apart.  I’m hoping for good news, so recapping now

Truly, the after effects were not as bad this time.  Except for the steroids.  Those got me a motor mouth and inability to  sleep just as badly as the first 2 treatments.  I took my nausea and vomiting pills starting with the morning of day 2 post infusion/treatment.  I had very little nausea and no vomiting.  I was holding off on the diarrhea meds, Pepto Bismol aka the Pink Stuff, until my stools were  loose.  5 days after infusion, I realize I’m constipated. No diahrrea.  Not even a drop. I started the stool softeners.  Wish I had known I would be constipated this time.  I would have started the softeners immediately. Would have been much better than the 7 days of bloated, flatulent existence. But, that too passed.

I was weak still. I had wondered during Infusion 1-1 and 1-2 if the weakness was from the cancer, the chemo or the NV and diarrhea.  No doubt the latter 2 contributed, but clearly the chemo alone caused great weakness. The neuropathy was worse this time.  I wondered if it was worse or if I simply noticed it more because the NV&D were not taking all my attention.  Also, I bought a new pair of shoes.  The arch support was superior. Seriously, my feet sighed with relief as soon as I tried them on. I wore them for 3 days in a row. At which point I realized, it wasnt the aching joints as much as the cramp in the back of my calves  from the new shoes that was killing me.  To test, I put the new shoes away and wore the pair which had not caused me pain. 3 days later, no pain in legs. Not in hip joints, thighs, knees, calves or ankles.

Really, I had more good days than bad.

I set up the knitting machine.  It is taken down every year in Dec when we put the Christmas Tree up in its place.  Took two weeks to pull it almost together. I ordered a new table to replace the yellow- metal, saw horse I’ve been using for 25 years.  I keep the KM in the living room. Yes on the ugly saw horse.  Finally decided I wanted the KM on a nice looking table.    There was a misstep at first but then I purchased an easy to put together table that looks nice.  This of course calls for rearranging all the accessories, tools and books. That’s an in the works project.  Let you know when I finish.

Finally 10,days after Chemo, I was able to go downstairs to my sewing/stash rooms.  I’ve been bad about ordering fabric, so that first trip was about putting fabric away and general cleaning. Second day I started working on my Eureka pant fitting.  Promise a full report in the future.

Why do I bring up Sewing and Machine Knitting?  They were great diversions for me.  My mind was occupied.  I moved about a little more and I got better. I felt better. More hopeful. More joyous. I began having short periods of time in the morning where I walked normally about the house. Compared to the staggering and wobbling, this was astonishing!

Today I am getting the midway blood work. Next Wed, I will get more blood work and a CT scan.  Truly hoping for good news which I will share with all of you soonest.