Chemo 1-2

Happy Valentines Day!

 

This will post the day of my 3rd Infusion.  In writing, I am looking back at the 3 weeks since Infusion 2, my Chemo treatment 1-2.  Infusion itself was again boring.  Just watch TV, read, play with the IPAD while the nurses hang bag after bag of medications.

Make mine rum, please.

Treatment/infusion day is not a bad day, just not exciting, Took my steroids on time which meant on Saturday and Sunday this was so true :

First day  after treatment and the 2nd day as well were good days filled with energy.  Could have run the quarter-mile.  Might have dropped dead at the end but I could have run. Did not get  to the sewing room on those days.  I overdid that first trip (earlier the previous week) and was still recovering from it.  I am so surprised by how much stamina I have lost. Well stamina and physical strength.  I simply cannot do things.  I have even lost the short, quick, confident steps that were my trademark when walking. At best, I wobble back and forth. At worst, a 93 year old, blind man would get further and look steadier than me.

Day 2 (2nd Day post infusion)  was great until about 3PM.  I remember telling DH I needed to lay down. To which he replied “Go lay down.”  Sometimes he misses nuances.  I meant I had to lay down or fall down.  I remember waking up and seeing it was 411PM.  Then the vomiting started.  Followed immediately by explosive diarrhea. I took the N/V pills as directed that is I took both scripts but staggered them. Using both pills helped calm the N/V but I still vomited at least once each day for 4 days.  In effect, I had nothing to eat for 4 days.  I also drank Gatorade nonstop.  Several products for hydration were recommended for using during this time. Gatorade is both readily available locally and economical.  The N/V was under control on the 5th day.  The explosive diarrhea continued another 2 or 6 days total. I could not take Immodium. I took 2 pills as recommended. When it got to my stomach it exploded into high heat. For several days,   I  had a large red spot and rash on the skin above where I felt the Immodium explode.  I started eating Tums. Before C, a single Tum was guaranteed to form a cement plug in my bowl. Now, nada. The Gatorade rushed though barely changing color between glass and porcelain throne. One night was particularly bad.  My rectum woke me insisting I needed to run to the bathroom,  I rolled over to get out of bed and threw up while still laying down.  trying to sit up only increased the force with which  the stomach contents were expelled.  I left DH to change bed linens and clean floors while I hied myself to the bathroom, DH must love me.  He cleaned all with comment.  Took the bed linens downstairs and started a load.  All the while it sounds like someone has turned the sink faucet on high.  Nope.  It was my rectum expelling its contents. Would never have guessed I could hold that much.  Finally, Day 6 not only did th N/V stop, but so did the diarrhea.  I am not sure anything I took for diarrhea helped.  Even my friends who have been through the same thing said nothing works.  You just cope for that week. AND then you are constipated.  Cancer survivors are tough.  They don’t have any other choice.

But then my life became near normal.  A few days of  puttering  upstairs helped me regain a little strength. My appetite was  good. My house became a little cleaner.  A little less disorganized.  Cant brag about my sleep. Frankly I was glad when I could sleep 3 hours. Otherwise it was sleep half hour be up an hour. Even though I felt much better, I was exhausted. The day came when I could go downstairs to the sewing room.  I took one stair step at a time, walking behind DH.  I limited my time in the sewing room.  I cleaned.  Straightened.  I sewed.  Yes I made DH a padded strap! I made blog posts, while upstairs. I counted myself 70% of normal. Up from 40 last week!  I have to admit Chemo 1-2 was much easier on me. I still need diarrhea control and allergy control.  Outside temps have been so low, I don’t go out.  So I still need to see the family doc about the allergies.

February, fortunately is coming to an end.  March, in comparison, will be much warmer.  March always feels like early, early spring in South Dakota. Definitely winter will have a last gasp.  But we all know, winter is over.  Life will fire up again and I will continue to heal.

Happy Days

I will have a Big C update before I go for my next infusion but today and in at least one other post, I want to share my utter happiness.  I have improved enough that I can walk down the stairs to my Sewing and Stash rooms.  I walk behind DH on the way down, in front on the way up. It is a slow trip.  But I make it!  I can sew!!!!! Well I can be in my Sewing and Stash rooms for about an hour.  Even an hour and a half just plain tuckers me out.

I spent the first day just putting things away. I did some more serge finishing and prewashing. Yeah, those little packages of fabric keep arriving.  I’ve already confessed this weakness:  If I can’t sew I shop for fabric.  But on the other days, which is nearly every afternoon,  I have been able to really sew.  I made a padded strap cover for DH.  He has a bag he likes to hang around his neck.  Strap cuts into his neck.  After one of our many car trips, he asked if I could make a padded strap cover similar to the seat belt covers I made when we bought my Durango.  Of Course!

Then I returned to my obsession.  The one that makes me drool. Fuss. Swear.  Pants….

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“C” Update though Jan 26, 2019

I  had 3 weeks of sheer misery after Chemo I-1 (first course of chemo first treatment). But I today want to share how much better I am and the efforts I made to relieve my particular issues.  They tell me everyone’s experience is different. Treatment always needs to be tailored for the individual.

Several days after I weaned myself from the pain pills, the brain-fog lifted enough for me to realize some of this misery was due to the cancer, some the operations (biopsy and medi-port install), some chemo; and some was unintentionally self-inflicted.  I was not thinking. Also simply was not able to do a lot due to the dizziness and fainting. So I didn’t do easy things like putting on my knee supports (knit tubes which apply compression) or wearing compression when my back hurts.  Several of my issues were caused by improper body mechanics.  I was either in  bed, in my chair (maybe in some weird position) or making a mad dash to pray to the porcelain god (my offering was often placed on the floor or front of the god.)

About a week after the first Chemo I-1,  my appetite returned.  I am eating more and better than I have in about 3 years! I gained 6 of the 8 pounds I lost those first weeks.  (Wonder if the extra food helped with brain-fog, dizziness, nausea or vomiting?) I crave salads, fresh veggies.  Even add them to sandwiches and eat them like snacks.  Can you say lettuce roll up? I can make 2 in about 2 minutes.  Eat them just as fast.

With the nausea/vomiting (N/V) gone and appropriate compression, I could be on my feet for longer.  Showering now included washing everything except the feet.  I had to sit immediately after the shower and washed them there. I could start caring for my skin better. My lotions stopped the dry, flaky, itchy skin (Yahoo!!!) and my body enjoyed the light massage –. which DH would have done but I never thought to ask. I blame it on Brain-Fog.  Finally I started making myself get up and walk the same household (bed, toilet, chair) short distances every hour. I became a little less wobbly. Definitely pleased that I no longer staggered, only wobbled.

I had to “feed the vampires” (blood work ) twice before Chemo 1-2.  Even though my walking was improving, trips to the lab were not easy. First I had to walk the gauntlet between easy-chair and car.  We didn’t take the close vehicle. No I insist my car be kept clean and backed into its parking place in the car port. DH had been terribly busy what with taking care of all my needs and assuming my chores, so he had shoveled a path, through all the multiple South Dakota snow falls, about 3 foot deep and 18 inches wide.  No matter how well  and often you shovel, ice will form at the bottom where you walk. So 5-10 min before I wobbled to the car, he was out there sprinkling salt, like flower girls sprinkle flowers at a wedding. I made it. No slips. Even enjoyed the fresh air a bit.

Next, unlike the big medical centers and offices in Sioux Falls, my 15 minutes away, local lab did not have easy access to a wheelchair.  They  round-one-up which would have taken 5-10 minutes.  Always impatient, I decided to walk the whole short distance. Well, I thought I made it through their ice-nasty parking lot, a couple of yards to the lab wouldn’t be bad. For someone still clinging to walls and stuff along their route when they walk, this was a mistake. Our sweet and pleasant  ‘Guide” took us to the lab where we were directed  to the office across the hall in which the staff could check me in and download the Sioux Falls records. Yeah, rural medicine is still catching up. We know it and think this is normal. No complaints needed, especially since everyone is sweet, attentive and apologetic. Fortunately, DH sat me in the waiting area and did all the line/counter standing while the staff worked, quickly I should add, to get the 5-6 papers the lab needed to feed the vampires they keep in the back.  (Ever notice there is at least one rather large room you can never see or get into?  That’s were they keep either vampire bats or the coffin for the vampire. I’m telling you that room is always there in the lab with the blood.)

It was well worth all the effort because the results the next day (before Chemo 1-2)  were incredibly GOOD NEWS.  My tumor markers dipped from 3000 to 812.  During the teleconference (I am able to get labs with 15 min of home, Chemo 1.5 hours away but surgery and somethings have to be done where my oncologist 3 hours away. Teleconferencing with the Sioux Falls office makes the first 2 shorter trips possible.  A real blessing in my mind and life).  Anyway, during the teleconference the Oncologist  says that kind of drop is unheard of (2188 he called it ‘almost 2200’.)  So he wanted the same Chemo mix (he’s hoping I can drop all the way to normal, 35, before the hyster). The RN (1.5 miles away in Pierre) and he concentrated on the side effects and lectured me about not calling. They said the goal was for the side effects to be tolerable and what I was describing was torture.

Concerned with hydration, I now have a PRN order at the lab 15 min away for a saline, sucrose or potassium drip. I’m not clear on that. I’ll take whatever they want to hook up. The order is for anytime I want which will be anytime I do not daily get 64 OZ of fluid in me.  I plan to call first and see if that speeds up the process. Maybe I can borrow a wheel chair–if I still need one.

Except for magnesium. all my other labs were OK.  They were down where expected (and I got the impression needed) but not far enough down to need help. Since potassium and magnesium usually track each other, I have scripts and directions for both minerals. They encouraged me to drink more and since SD weather is kind of bad right now they encouraged me to walk around the house more and more often. Big thumbs up for good appetite. They said not to worry about eating too much or gaining weight. Got a new N/V med which happens to be the one I have for reflux and successfully used to control the N/V of the first few days. (The others barely helped and once I started heaving, I couldn’t stop).  The “new” N/V med just has a different name which I didn’t recognize and I couldn’t remember the name of the med which I successfully used during the teleconference).  In a way all is good because while we were discussing the N/V meds and timing methods, I kept thinking why would I play around with a different med when I have something that works? Monday I will call the RN and confirm what I read on Google is correct i.e. both meds are the same. It wouldn’t be the first time I’ve made an error, or Google either.

One real source of great misery we barely talked about is my runny nose. My sinuses went into overdrive.  I was blowing my nose every few minutes. Even DH noticed the kleenex mess.  My nose became inflamed like an old drunk’s. I was getting minor bloody noses from blowing  and, you guessed it, picking.  The Navage helped but couldn’t pry some of those crusts free. I sent DH out buy everything on the shelf that might help dry up the nose. Robitussin did help but brought back the dizziness and fog-brain. The runny nose was bad and the resulting cough  was a real killer.  I continued wearing adult diapers because I’d discharged a little urine every time I sneezed or coughed. With the Robitussin, the nasal discharge decreased.  Still had all the other symptoms plus now the urine to cope with. Slowly the sinuses got better.  I could wear regular “granny panties”.  I blew my nose less but developed a nagging dry cough. Once it started, it wouldn’t stop until I vomited.  Doc said this is quite a common side effect of all my cancer-related scripts.  He sort of left it up to me to try over-the-counter stuff and cope.  Me,  I’m calling for an appointment with my family doctor.  She has been monitoring the allergies (diagnosed allergic rhinitis) and stepping in with a shot  some SD Autumns when I get almost this bad.

My Oncologist’s says I can expect to have the same issues about the same time after each treatment.  We are keeping the same Chem mix going because of the great results   But I can’t keep tolerating the nasal discharge.  I want drugs. I am willing to accept “use only during Chemo” but I want a drug to calm the sinuses.  I believe the family Dr will step in.  She may want to talk with the Oncologists first.  The Oncologist may not have understood how bad this is for me.  We talked about a lot of things.  Maybe I didn’t talk enough about this symptom.  Family doctor knows what an issue my allergies have been for many years. She will be honest with me too. She will tell me if I am whining or if I have a reasonable demand.  I like that. I believe the body is prejudiced towards health, wholeness. We are responsible for properly feeding and otherwise caring for it. Not to say that illness doesn’t happen or that anyone or thing is to blame. I absolutely call the doc whenever I have issues AND I take their advice. What’s the point of going, if your just going to discard their recommendations?  Feel like I have a great open relationship with her and she respects if not completely shares my opinion. So I am going to see, listen and do what she says!

I am feeling much better.  I would still say less than 60% (talk more about that 60% later).  Like I can stand upright and make it to the bathroom.  I can shower fully no just rinsing (except for the me-port)  Trimmed the hair to 1/8” on day 15.  Interestingly whatever isn’t falling out is growing (current length 1/4”) .  So easy to wash and pat dry.  Looks odd to me but DIL says I’m one of the few who can pull it off (that girl is a keeper!). I am not shivering, not feeling so cold which I think is largely due to getting up and moving about.  Never realized how much I do move in my routine activities.  Even sewing, I am up on my feet moving about.  Being sick, I wasn’t moving much. Not sewing at all-couldn’t navigate the flight of stairs. I can see my leg muscles atrophied.  Having to build them up.  My knee popped taking the 3 front steps the last time I returned from feeding the vampires. So my mobility is really limited. Also still coping with the cough.   Since I am feeling so much better and since I know my reaction to chemo,  I am hoping to control most of it. Make the side effects tolerable instead of debilitating. Yes, I promised and will call if I’m miserable instead of tolerable.

BEST NEWS OF ALL after Chemo 1-2 (Friday) and all the steroids they gave me. I went downstairs to sew on Saturday. Actually, I did a lot of cleaning, putting away and a little ironing. Serged the ends and prewashed the fabrics I have been accumulating. Yes I still have the issue “if I can’t sew, I buy).  Had 3 orders less than 20 cuts of fabrics to tend too. With pleasures I might add. Bottom line, I feel like I”m 60%. I can do most of my normal activities, am eating well, most of the symptoms have calmed down but I need lots of rest. I need not to push a little but not a lot t continue improving. 60% that’s major. That’s over-the hump!

I cannot thank you, my readers, enough for your well wishes, your support, and your prayers. I will repeat the drop of ‘almost 2200’,  from 3000 to 812 is unheard of. It is a miracle.  The chemo did a lot of the work, but I believe the world-wide prayers worked at least a part of this miracle. Please continue to pray for me. After all, prayer never hurts and moral support in every form is documented to help,

 

love you all

sdBev

 

 

 

Stream of Conscious Update After Chemo 1

I had a mediport installed 1/4.  Figured it would be easier in the long run since blood draws and IV’s are terribly uncomfortable.  See, I have the veins of girl but they always insist on using the  canula for a healthy, early-adult male.  Rarely works.

The next day I had my first chemo treatment.  Neither procedure was bad, just long and boring.  A whole lot of hurry up and wait.  Chemo-1 took 7 hours.  The next day I was fine until I started taking the prescribed steroids.  Tell you what, I wouldn’t voluntarily take them things. How the heck does someone get addicted to steroids?  Couldn’t sit. Couldnt sleep. Twitched. Jerked.  Kicked DH.  We now time-share the bed. Someone said it was pseudo-parkinsons. Had a geat uncle with Parkinson’s.  He got it from shell shock in the war. Big guy.  About 6’.  In the his later stages, you tried to stay 3’ away because those arms and legs could flail away at one.  Interesting guy.  Intelligent.  Told the best stories.  In between shaking — but stay out of reach of them legs!

Back to my troubles…

After the steriods I developed a number of sever discomforts. The vomiting was regular. Pills prescribed by the oncologist either didnt work or made me faint.  Dont know about you, but I need to be upright at least long enough to get to the bathroom. Wasn’t happening. Then the diarrhea set in.  I think of myself as a practical person. So after I soiled all my panties, I sent DH to the store for some adult diapers. I wont detail all my discomforts —there were many—will add all the pills after the steriods made me a zombie.  Couldnt think. Dizzy and faint. I realized I had never understood the extent of the misery cancer patients endure.  Reminds me of the WWII, Josef Mengele. Of stories of subjecting the human body so dispassionatekt, so coldly to extremes just to see what the human body could endure.

8 days out from the first Chemo and I feel maybe 40%. I can not-only make it to the bathroom—except when I sneeze or cough thus still in diapers— but have done some house straightening. Even only 2 adults need picking-up after. Someone suggested a nice soak in the tub.  I wouldn’t do that in my tub.  Only take a shower and that for bare minimum of time.  Haven’t cleaned the bathroom since early Dec.  It is getting groady.  Ever wonder what you can do for a cancer patient?  Get your mask and gloves out.  Go scrub their bathroom down.   I became thankful for every little improvement.  Like the day I threw up  once. Only,  In the trash instead of the floor. Or I made it to the bathroom and didnt have to also sponge bathe and change my diaper. The exhaustion was so over whelming those activies took an hour.  Lots of sitting on the porcelain throne panting. Forget about extensive personal grooming—another nice gift if you need a suggestion for a cancer patient.  OK they probably don’t want you giving them a bath, but a facial? An arm or leg or foot rub?  Those chemo-caused joint pains are real.

Yeah its been miserable BUT as I said, I am at 40%. No longer a zombie—quit all the pills as soon as I could. Up quite a bit. Eating small but complete meals i.e. protein plus starch plus veggie.  Went throgh nearly everything in the cold,flu, allergy aisles and have finally found something to control the cough (no more pee in the diaper when I sneeze or cough. I may be getting out of diapers.  Turns out, my solution to the dry, hacking cough is a 3/4 dose of adult strengh RobitussinDM.  Hate the stuff but love the results

Not looking forward to the next Chemo Treatment.  But absolutely going to have it.  For all the weakness, Cancer Patients are a strong lot.  I am at a good time in my life. Ive made peace with my mistakes, but Im not in any hurry to meet my maker.  Id much rather enjoy this life Ive been given.

 

 

PS thanking you again for the out pouring of love and compassion; and your many prayers.  They most certainly help.  Late comments also welcome.  It is surprising at how a kind comment of support can lift my day.  Thank you and bless you.

 

I have a plan

Not a sewing plan but a cancer treatment plan.  It is such a relief to know what I shall be doing to get well. First, my diagnosis is still not pinpointed.  I have Serous Adenomacarcinogen but the biopsy did not distinguish between ovarian or uterine. My oncologist, whom I liked immediately, said the exact diagnosis isn’t a problem because the treatment is the same for both and pathology will tell us for sure after the operation. I am having a medi-port installed Jan 3 and will have the first of 3 chemo treatments the next day.  One nice thing, after this first treatment in Sioux Falls (3 hour 1 way trip which means I will be paying for a hotel room overnight) I will recieve my other chemo treatments weekly at a location only 1 hour away. (Up and back in one day!)  They use something like Skype but especially for the Avera Medical System, so he can check in and see me while I am being treated at the remote location.Kewl, huh? After the 3 treatments, I should have surgery followed by 3 more treatments.

OK the bad news, I am already Stage IV.  I must make satisfactory progress after the first 3 treatments or, he didnt say.   This is very serious with less than 15% of the diagnosed surviving 5 years.  The surgery may affect my liver, stomach and bowels because the  CT scan showed tumors in these areas.

Would you like to pray for me?  Pray that my Tumour Markers significantly drop from 3000 by the end of the first set of chemo treatments.  Normal is 35.  Ive got a lot of improving to do.

Again, thank you for your kind comments and many prayers.  I need both and am so glad you freely gave both

sdBev

Sewing Hiatus

I am taking an indefinite hiatus from my sewing.  I have beendiagnosed with ovarian cancer. I am not well enough to even get to my sewing room. It is all I can do to perform minimal grooming and make it to the bathroom on my own.  Have no idea when I will be sewing again.  I am waiting surgery, which has not been scheduled, followed by chemo.  One thing I did not want was to simply disappear from the internet and so have made this post to let you all know

sdBev

PS debating on a pink or blond wig.