Cancer Chronicles - Barbara and Noel's Journeys

 

Cancer Chronicles – Book 2 – Chapter 1             

1/24/21

 

As most of you know, last year about this time [actually the beginning of Jan. 2020] Noel was undergoing his path down Chemo highway to get rid of his testicular and Non Hodgkin’s cancers.  As a family we pulled together, made sure nothing got in the way and that he was able to heal.  His doctors declared him rid of both of them this past August.

This past fall, I’ve been having unusual symptoms and was finally able to get an appointment [covid delays] with my gyn doctor.  65 year old post-menopausal women shouldn’t be bleeding – if you are – check with your own dr…..That visit led to biopsies, an ultrasound and a diagnosis I really didn’t want to hear – Ovarian cancer – technically Carcinosarcoma.  I will be meeting with the Gynecology Oncologist on Wed.  A stint in the ER Sat evening after checking with the Nurse Navigators on symptoms I was feeling led to exams, morphine drip, bloodwork and a Cat scan….my soon-to-be Gyn-Oncologist was on call that evening so she ordered the tests since I was there.  About 5AM I was able to come back home – nothing else they could do at that point – pain had resolved, no anemia to worry about, and the morphine was out of my system by then so I could drive home. 

The Gyn-Oncologist called this morning – is setting me up for surgery as soon as possible now that they have most of the information that they’d be looking for.  A Robotic hysterectomy for sure – less than 24 hrs in the hospital. Likely within the next 2 weeks.  The covid-crazies in hospitals has taken the dr’s ability to schedule things like this and make it more difficult.  Not sure about the rest until they can look at the stuff they take out.  All I can say is they tell me it’s a mess in there.

Cory’s aware I am having surgery.  She’s petrified that I have cancer so we’ve chosen not to confirm that [or not] until we get the results post-op and the rest of the game plan is known.   I am sharing this, now, because there are some social commitments that I will not be able to make and wanted to let people know the ‘why’ behind it.  Better to be out in the open – that’s something we learned through Noel’s experience.

We are tackling this one step at a time.  First with facts, then emotions.  We are better prepared this year, having run the gamut last year.  As they say, more to come……later.

 

 

Cancer Chronicles – Book 2 – Chapter 2                                

1/28/21

Well, today I saw the gyn-oncologist.  She provided updates to my situation.  First, my surgery is set for 2/4.  I likely will be in the hospital overnight, leaving in the evening of the 2nd day.  

Seems I have at least a Stage 2 carcinosarcoma, because it involves not only my uterus but my cervix – that’s where the ‘2’ comes from – more than one organ involved.  During the surgery, local lymph nodes will also be taken to determine if any of the cancer has moved around.  The surgery will be a robotic one, with 5 small incisions, rather than abdominal open surgery.  

After the surgery, they will do a further staging based on the pathology report and at that point, the full treatment plan will be identified.  At present it certainly includes getting radiation.  If it’s moved outside of the 2 organs, then treatment will also include chemo – 6 rounds , 3 weeks apart, similar to Noel’s chemo pattern.  We won’t know the specific cocktail until that report which will be available approx. 5 days after surgery. 

The radiation portion will be at West Penn Hospital, in Pittsburgh, while the chemo – once known if it’s involved – can also be there or I could choose to have it at Forbes Cancer Center in Monroeville.  Both are part of Allegheny General Health Network; we just need to see which one works better for us.  These are the only 2 locations within this medical network that handles gyn – oncology.  That’s why I won’t be using the same teams Noel did – gyn-oncology is a specific sub-specialty with it’s own specific sites supporting their patients.   My bloodwork will also have the option to be at either location, too.

Once the post-op procedures [ radiation or radiation+chemo] are known, we will break it to Cory since she’ll need to know that the follow-ups are going to happen.

The sheer number of comments from everyone on my first post about this is overwhelming and the sense of support is amazing. 

Thank you all!

 

Cancer Chronicles – Book 2 – Chapter 3

2/6/21

Surgery etc.

Well, Thursday Feb. 4th was surgery day.  It’s taken me until today to have a clear enough head to write some.  Mostly I’ve wanted to sleep and rest.  Have to move every so often because I get butt burn.

Surgery took from 10:30 -  4:45PM  Dr. had to take a number of breaks because it was longer than they expected to be able to clear everything up, and called Noel a few times during the surgery to give him 3 updates – 2 during and one afterwards.  The reason for the lengthy surgery was that she had to clear up all of the ‘junk’ left behind by my prior 3 abdominal surgeries.  Evidently there were adhesions moving body parts into weird locations, that she had to rearrange to get to what she wanted to excise.  At the end of the whole thing, she couldn’t get to a set of lymph nodes without potentially damaging my colon, so she left it.  That signals that chemo is definitely in order at this point.  She used surgical glue to close up the 6 entry points for the robotic surgery so no stitches to remove.

I was able to leave on Fri. – that was a comedy routine of its own.  This nurse thought that one had called for transport, that one hadn’t so I sat for another ½ hr while Cory and Noel were on the street waiting for me.  Overall the care was good but the departure left a lot to be desired. 

Right now my gut is in pain, I have to be careful that Cory or Luna don’t land there – but it’s better Sat. evening than it was Friday.  Getting up from laying down is an exercise in figuring out which method is least painful too.  I was too fuzzy from everything to write earlier, so here we are 😊

I won’t know the full details of the labwork until the pathology report is done.  That’s expected to take until next Fri.  At that point, it’s a matter of heal some more from surgery, then get ready for the next rounds.

Thank you ALL for the kind words, prayers, thoughts, comments.  Progress is being made.  We will beat this!

 

Cancer Chronicles – Book 2 – Chapter 4

2/16/21

Pathology Report –  draft plans and more fun!

The past 16 hours have had more excitement than anyone should be allowed to have!

Most importantly, my doctor called with the pathology report today about noon.  Confirmation that the cancer is Carcinosarcoma, a very aggressive type.  Surgery got almost all of it out.  The left lymph nodes showed micro-metastasis, which means there’s a high likelihood [30-60% chance] of the same in the right lymph nodes that weren’t removed.  Left and right fallopian tubes [surprisingly still there pre-surgery] showed no sign of cancer after removal.  Cancer was limited to my uterus and lymph nodes – this is a good thing.  I explained it to Cory that there are tiny bits of ‘glitter’ [aka cancer cells] still inside and we need chemo to make them go away.

Since my CAT scan is already done, next step is to meet with the oncologist who will manage the chemo treatments. Then get scheduled for a port insertion and figure out the schedule.   I will be having my treatments at Forbes Cancer Center, still part of Allegheny Health Network but easier on us for getting in and out.  The medications I will be getting are Carboplatin and Paclitaxel in combo as well as the various concoctions that make it easier to handle, like antihistamines and antinausea meds.  Each round will take about 4-6 hrs of treatment through the port.  Then time off [for good behavior! 😊] for about 3 weeks before another round.  Rinse and repeat for a total of 6 treatment cycles.  At that point I will get another CAT Scan to determine if all is well.  If not – then we talk potential radiation treatments.

I am going with Cory to get my hair cut to ‘above shoulder length’ to start with, later this week.  My hair will likely fall out between round 1 and 2, after which we will see what’s next in that regard, but I didn’t want to deal with the full length of my current length being what comes out.

So, remember I said past 16 hours of excitement?  Well,  last night, as a result of it NOT getting so cold here that it was snowing, we instead got sloppy sleety rain.  That lead to the existing snow to melt.  All is good, right? Well, not so good, in that the water off the roof found it’s way into our basement utility room just under the front steps.  And then it continued to roll down through the basement storage area and bathroom, into the laundry and hallway. 

When found, at 10:30 last night as we were getting ready for bed, there was over an inch deep water sloshing in the laundry room.  Cue the next 2 hrs vacuuming it up with shop vac, moving things that were in the water and in general, attempting to salvage what we could in a very packed storage area.  After getting up what we could, setting up 2 dehumidifiers and then phoning in a claim to our homeowners insurance, we could finally go to bed last night.  Of course I was starting back to work this morning…. just what I needed 😊. 

We’ve had the ServiceMaster folks out to plan for remediation; tomorrow they come out with their drying heaters to work on fully drying everything up.  More on that fun later.

So – as of today, we have a diagnosis, a plan and MORE stuff to keep us occupied.  Thank you all for the emails, comments, flowers and cards.  Your support has been most welcome and heartwarming.  Now we work on the next steps.

 

Cancer Chronicles – Book 2 – Chapter 5

Getting the show on the road!

2/26/21

This past week included a visit with the surgeon and the oncologist.  The surgeon had to clear me for chemo, which she did. Four weeks from surgery and everything is healing well.  I haven’t bounced back from any abdominal surgery this well!  If you ever are faced with a choice of robotic surgery or traditional – seriously, go for the robotic!  I took the week after surgery to rest and went back to work on the 16th, handling things around the house as well, with no real impact.  I rest when needed but that’s not very often.

During that meeting with the surgeon she filled me in further on the pathology report.  Stage 3C1 carcinosarcoma.  The Stage 3 part is in reference to cancer being found in 4 areas – uterus, cervix, fallopian tube and the lymph node.  A whopping .25 mm micro-metastatic presence in the removed lymph node.  She confirmed also that they didn’t go after the 2nd lymph node because they didn’t want to cause complications [nick or larger impact] to my colon – that would have been much worse.  So, since the cancer spread outside of the uterus and cervix, best to treat with chemo.  After the chemo treatments, a CAT scan will identify whether I need radiation to finish getting rid of it or if the chemo can take care of it all.  After all of this attack, there’s a 30 – 70% chance of beating it but without the radiation it would be 30-40% so we go with all guns blazing for eradication.

Thursday I saw the Oncologist and her team.  They mapped out a busy week next week.  I am scheduled for Port insertion on Monday morning to handle the chemo infusions.  Then Wed., I have a training class – essentially the Do’s and Don’ts of living through chemotherapy.  Given some of our scheduling, Cory will likely be with me for that training session – I am allowed one support person and this allows Noel to get his allergy shot since they are at the same time.  My 1st round of Chemo is scheduled for Thurs. morning.  The protocol involves getting Carbo/Taxol combination, as well as other meds to make it tolerable.  From what I’ve been able to find out, this combo will have me losing my hair pretty much before the end of March. Not looking forward to that part but…. the faster this is started, the faster it’s over and behind us.  My 2nd round is also scheduled for March 26th – I opted for Fridays for the rest of the cycles, to give me the weekend to recover and still handle some levels of work.

We are going out for dinner tomorrow evening for a ‘special meal’ similar to what we did for Noel before he started his regimen, and I am stocking up on things that are better gotten in person than using ‘shopper services’ right now.  Cory has stepped up her game too – helping where possible – and being a champ.  Still concerned, as we all are, but she’s doing better than when this first broke.  As you could see with the haircut [her cutting my hair from long to shoulder length] – I am trying to involve her in as much as possible so it’s not a scary mystery.  It’s helping her, which in turn helps us. 

There are some differences between Noel’s cancer and treatments and ‘living with chemo’ and the cancer I am dealing with.  His involved a blood cancer, and his immunity was more compromised than mine is supposedly going to be.  The Red/Green/Yellow weeks we had mapped out for him aren’t appropriate for tracking my cycles of chemo. Theoretically the first round will have me tired for a few days, then the next ones will increase fatigue levels each time.  We shall see.  I have been overwhelmed by the outpourings of support coming my way – people are asking what they can do to help.  Right now – I am not sure yet.  Thank you all for the kind messages, emails, cards and support offers.  They truly mean a lot to us.

Meanwhile, the basement is dry.  The machines all left on Monday.  We haven’t yet heard from the remediation team on what THAT schedule will be – so are in a little bit of limbo there.  I am sure by the end of March, that too will be underway.

 

Cancer Chronicles – Book 2 – Chapter 6

3/4/21

Chemo #1 in the books – 16% done

Today was my first infusion of all the lovely chemicals that are going to attack the cancer cells, and a bit more in the process.  Many different items were pushed through my port which was installed on Monday.  These ports make it easier to administer all of these chemo related items – without in, veins would collapse with the volume going on for the length of time it will have to be done.

Arrived at 7:45 for an 8AM start.  A few hiccups, like the dr. hadn’t signed the paperwork to start the sessions…. which delayed getting the meds up to us.  But the nurse went to her office rather than wait for email replies, got the signatures and we were off and running.

I had taken my laptop intending on doing some reading of things I parked to do precisely that…..only to find out that where I was parked, no WIFI.  So I mostly slept between rounds of things, especially after the huge dose of Benadryl which was the first drug.  Woke a few times, walked a little and was done by 2:30PM. 

One of the final meds they gave me was the same Neulasta medicine delivery that Noel had for his first treatment.  It's a small plastic item sitting on my right arm, with a tiny catheter into my arm's vein, and counting down 26 hours from when inserted.  At that point it will do a push of the medicine, beep a bunch, retract the catheter, and be ready for removal.  Noel's time with this got denied for future use by insurance.  However they approved mine this year.  Puzzling out what changed.  Is it more often used, so price came down to within insurance co. norms?  Don't know - just curious.

Had taken my lunch to eat, but slept thru lunchtime, so I ate it after the treatments concluded,  while waiting for Noel and Cory to pick me up.  Took another nap later in the afternoon.  Woke up feeling fine!  Made Cheddar Cheese soup with ham for dinner as planned.  It was a packaged mix….but still, it was dinner 😊 Really good too! Wanted to take advantage of feeling good enough to do it.

I have a few days before my immune system is trashed, then the rebuild starts.  That's the reason for the meds and the plan.

I am now waiting to see how long before the hair loss starts.  Supposedly will happen in about 2 weeks, but definitely after my 2nd chemo treatment in 3 weeks.  I’ve also heard that, while these treatments hit people differently, even for the same drug combos, the reactions tend to get worse as we move forward.  So I am relishing the good post-treatment time I have, knowing the roller coaster hills have valleys that are coming. I am also trying to pump up my liquid intake to help flush out the toxins ASAP.

The basement saga continues as well – still waiting on the verdict about the floors with the asbestos tile.  Can’t wait [insert sarcasm here] for when they are working on the floors, the dogs are nuts [they might go to Doggy day care if too bad] and I am trying to work.  Gonna be fun times all over, here!

 

 

Cancer Chronicles – Book 2 Chapter 7

3/28/21

Chemo #2 done – 1/3 of the way

 

Yesterday’s chemo went well, other than the doctor’s schedule causing it to delay almost 2 hrs.  All of my bloodwork looks good according to her, so on we go!  Luckily the nurses were very helpful and got everything done as efficiently as possible. I fell asleep after moving my mask to drink some water, without replacing it.  So rather than wake me they drew the curtains around me to not disturb.  Very thoughtful.   I am working with the staff to move my treatment days back to Thursdays, since the day after treatment doesn’t seem to be a ‘down’ day.  I have energy, mostly, and no aftereffects that day, due to all of the pushed meds with the chemo.  Again, I was fitted with he Neulasta device [that I call the bug] which is attached to my arm and delivers its dose about 27 hrs after attached.  It went off today as planned.  This is the medicine that caused the bone pain last time.  It’s because it is designed to stimulate red blood cell growth in my bone marrow to counter the debilitation that the cancer drugs cause.  So it’s a good thing  but is painful.  Last time, calling the on duty dr, I was given permission to take oxycodone if I needed them, so am holding on to them ‘just in case’.  So far tonight, no impact.  We’ll see how tomorrow goes.

2 weeks after my first dose of chemo my hair started to come out.  At first, just a little more than usual, and then it accelerated to huge handfuls coming out every time I’d brush my hair, let alone when the wind blew or just walking around.  I got to feeling like I was a tree in autumn, losing leaves like crazy.  This was the most depressing part of this illness.  It’s the visual, the in your face part.  The rest isn’t as visible, so is more easily handled.  Monday I have an appointment with some volunteers that provide a wig in the patient’s color choice, style choice – free!  We shall see what they have so I don’t look so much like a naked mole rat on my head.  It’ll be warmer, too, if I can tolerate it on my head.  I’ve never really been a hat person, so this is all new.

About 2 weeks ago I received a wonderful ‘care’ package from a group called Mrs. Claus, which is a mission group from a church nearby.  One of the Special Olympics coaches [ Katherine Blahnick] is part of that mission and put my name into their list.  Truly wonderful package, chock full of good things like a handmade shawl, a ‘chemo cap’ that came in handy these last few days, books to keep me busy [ word search, coloring books with colored pencils].  I’ve ordered a few more for variety.  They should arrive tomorrow and will help since I now have the shortest buzz cut – it would make the intake officers at boot camp happy!  I didn’t want to shave it fully since that tends to cause bumpy skin.

Thank you to all of the friends who have been saying prayers, checking in with me and Noel, and those who Cory has been talking with.  She’s scared, very scared, that I am not going to beat this.  We keep reminding her that’s why we are in this fight – to beat it.  Told her that she was going to have to deal with me for another20-30 years!

 

Cancer Chronicles – Book 2 Chapter 8

April 17, 2021

Chemo #3 done – 1/2 of the way through!!

 

In case you are curious – these are the meds delivered:

• diphenhydrAMINE (BENADRYL) 50 mg in NS (PF) 10 mL syringe

• EPINEPHrine (EPIPEN,AUVI-Q) injection 0.3 mg

• famotidine (PEPCID) 20 mg in NS 50 mL IVPB (premix)

• hydrocortisone (PF) (Solu-CORTEF) injection 100 mg

·        CARBOplatin (PARAPLATIN) 620 mg in NS 250 mL chemo infusion

• PACLitaxeL (TAXOL) 360 mg in NS 500 mL chemo infusion

• sodium chloride (NS) 0.9 % bolus 500 mL

·        pegfilgrastim (NEULASTA) on body subcutaneous inj 6 mg  - this was on my arm as I left for later infusion – 27 hrs later.

 

For this round, I decided to have Cory join me as my ‘support person’ for a few hours.  Mostly to help her understand what was going on and make her feel more a part of it.  She did really well during the few hours she was with me. Mission accomplished= demystified it, she got to talk to the dr. and ask her most burning question - 'Will we be able to go to Disney World in October?' - to which she got a response that indicated it was likely possible, as long as everything is going well. She met my oncology nurse Don, as well as some of the other support staff, too. Had a Ginger Ale, and watched TV somewhat. What's not to like with a visit like that!!! I struggled to stay awake until it was time for her to go.  Then she went off for her afternoon with Kristen while I finished the treatments.  At dinner I asked her if she wanted to go again.....NO - once was enough. Glad she wasn't there all day!

The hospital has so many programs to support people going through cancer of all types.  Ones I’d never thought of.  I’ve attended a class on handling wigs and doing makeup [not that I wear much] to help counter the loss of eyebrows and eyelashes [mine haven’t disappeared yet].  I did choose a wig to wear but haven’t yet started with it since I was having a rash reaction on the back of my head.  Now that it’s healing, I might try it this week.

There seems to be a rhythm now to the chemo cycles.  The day I have chemo I feel ok but a  little tired afterwards.  There are the reactions to the medications which make me sleepy then recede.  The day after, I usually feel ok but tired.  This is the day that the Neulasta shot will hit about 6pm.  Then, Day 2 after chemo I start with the bone pain. Learning to think of it as ‘building me up’ since it’s designed to help my red blood cells build up after being knocked down by the other medications in the treatment. That bone pain lasts for Days 2 thru 4.  By day 5 I am feeling better but tire easily, can make it through the work day but a nap before making dinner is good.  Each day I feel better, might tire easily, get dizzy, but can handle most of what I need to around here. 

While talking with the doctor before treatment, we went over the weekly bloodwork results - and they are showing really good things.  I seem to bounce back well from each chemo, recovering and not dropping to dangerous levels. Most importantly, the CA125 measure is more than 1/2 what it was when we started, and that's the cancer marker.  So it's reducing!!! She was really pleased with them.

While we are handling the chemo treatments and after effects, Noel has lead handling the renovations from the water damage to our basement areas.  Talking with the flooring guys, and trying to figure out schedules that allow for the movement of 'things' while flooring is laid.  Huge Tetris puzzle going on.

I’d like to thank everyone who is reaching out, with their thoughts and posts of support.  It helps 😊  Special thanks to a friend who has made some meals for us to have around my chemo days – they are a godsend.

 

Cancer Chronicles – Book 2 Chapter 9

5/6/21

Chemo #4 done – 2/3 of the way through!!  On the Downhill side of the curve!!!

 

My usual nurse in the infusion lab, Don, was out on paternity leave, so I had Anna.  She’s been in the US for 10 years but was born and raised in Russia – that made for some interesting conversations when we were starting.

No Dr. visit this morning, so just on to the infusions.  Good thing – it helps get done earlier!  Same cocktails, same results.  The first one, Benadryl, gets my legs crampy, parts of me burn a little.  My legs keep wanting to stretch, move, mostly involuntarily, but this all subsides in about an hour.  Probably because of the rest of the infusions, like the steroid, but it’s something I’ve gotten used to and just work through it. 

I’ve been taking my own blanket – one that was an award for fundraising for Special Olympics Polar Plunge.  It doesn’t leave the little white fuzzies all over my clothes that the hospital’s blankets leave.  It’s nice and cozy – they keep that room COOL!!!!  I was able to make it through one catalog and some FB browsing before dozing off.  Woke up as the Carbo was going in, usually is set for a 90-minute infusion and I woke up with 30 minutes left.  Then the final one – another 30 minutes.  Get the Neulasta put on, port flushed and DONE.  Just in time to catch Noel, who was dropping Cory off to work at Home Depot for her 2-6 shift.  Saved him a round trip.  Quiet evening watching Dr Doolitte after eating some take out. 

Meanwhile, we are still working on the recovery from the basement flooding, too.  The front porch has been treated to not leak again [YAY!] and has been seriously tested with these last few rainy days.  Basement under the steps is still dry.  Now we need a concrete guy to work in the utility area to create a waterproof lip about 3-4 inches tall as a ‘retaining pond’ in case of flooding from the hot water heater or any other item that would do so.  Add in a pump that will pump the water out of there through tubing, and we’ll be able to ensure that the rest of the downstairs won’t flood from THAT area again.  THEN we can do the flooring renovation.

Tried to have some flooring people out for estimates but the work they want us to do to move everything can’t be done with Noel and I out of commission, so we are looking for flooring people that will work with us – probably by only having one room done at a time.  That way, we can empty the bathroom into the hall, do the bathroom flooring, then reload it.  Then do the laundry room, emptying into either the storage room or hallway, getting it done, and reloading the room afterwards.  The final portion to be done would be the hallway.  So now we are looking at installer options AGAIN.

Meanwhile last week had further excitement when on 4/30 Noel learned that the reason he’s been in such back pain for a few months is that he has 2 broken vertebrae – L1 and T12.  They are next to each other in the lower back area.  He has an appointment for a contrast MRI to see how badly and what can be done.  This will also help identify somewhat how old they are.  Currently the 2 leading theories on how he broke them is [1] when he fell off the stage backwards about 14 months ago – at that point more attention was paid to the concussion he got and not to his back, or [2] one/some of the motorcycle related incidents he had in his 20’s/early 30’s.  No matter when he got them, they have to be treated so this MRI will tell us how.  This is why he’s not allowed to move any of the boxes any more….and why we have to stage the bathroom, laundry room and hallway renovations.

Other fun around here – we have to have the 2 huge [25 to 30 ft tall] pine trees out front removed before they fall over and hit the houses across the street while taking out all of the wiring on the street.  The trees have been losing huge branches and pulled the wiring a bit last month, and the power company said we’d have to do so – that they’d not be responsible for tree removal.  The removal is finally scheduled for 5/15.  Tree removal company has to coordinate with the Borough because our street will be constricted for a bit while they drop them and cut them up. 

So, life isn’t dull while going through these treatments.  But I am in the home stretch.  2 more, ending mid-June.  Then a CAT scan to see how ‘we’ did getting it to go away.  And then further determination of treatment.  Radiation remains a possibility – depends on what they see.  But I am heartened by the fact that it’s so close to the end.  Once done with chemo I can get a dentist appointment [postponed since March], go with Cory for the massage she got me for Christmas, and socialize a bit more as my immunity improves.

Thank you all for your prayers, kind wishes, offers of support, gifts that keep surprising me in the mail.  The support is amazing and really helpful, especially during a down time.  I recall how many people are pulling for us, and then I feel better. 

Here’s to KICKING CANCER’S BUTT!!!

 

Cancer Chronicles – Book 2 Chapter 10

6/1/21

 

Chemo #5 done – 5/6th  of the way through!!  I can see the end of Chemo!!!

Last Thursday, I went for my 5th Chemo with my cheerleader, Cory.  She stayed the whole session this time.  I warned her that I’d wind up falling asleep for some of the day and that she needed to let me do that.

This time I went into the Dr meeting with questions.  I wanted to know the significance of some of the lab work that showed I had lower than ‘normal range’  for platelet counts, hemoglobin and red blood cells from the blood work. I also wanted to know why I was slated to wait a full 2 months after the final chemo to talk with the main Dr handling my treatment.  

Got some good answers – the platelet, hemoglobin and red blood cell counts were within their expected levels – high enough to continue treatment, but they’d be lower because of the chemo.  Those levels they were comparing with weren’t for people having chemo – they were just the general range.  Ok, Phew! Got that cleared up.  If they weren’t high enough, they’d have to pump in bags of platelets or blood – so at least I are at a tolerable level.

As far as the follow-up visits after the 6th chemo, Wow!  Just mention it and get the MRI scan ordered!  That’s the one I want – to see what, if any, cancer cells still are running around.  With all of this chemo, I am really hoping its all gone, but this check will tell.  And, after questioning why it wasn’t scheduled, it’s now scheduled for the Mon. after my final chemo. 

This round’s Neulasta is kicking me, as usual.  Sat. and Sunday were pretty much recuperation days, but today, Memorial Day, I had the energy to do supermarket shopping.  Saturday was also the day Noel and I put together the new treadmill -his doctors got on his case for losing muscle tone as a result of some of the issues he’s facing.  So now, no matter the weather, Cory, Noel and I are able to do walking.  We have it set up just off the kitchen and it allows our laptops / tablets to be viewed to make the time pass faster.

After a bit of reflective sadness, about the possibilities of conquering this specific type of cancer carnicosarcoma] I am back on the hopeful path.  I don’t want to wallow in the ‘negative what if’s’…..I am focusing on getting thru this, getting to the next step [post chemo updated diagnosis] and dealing with that, once known.

Part of the sadness has to do with hair loss, loss of identity as a result. Everyone keeps saying “It’ll grow back” – yeah, that’s great but when?  And finding out that it could take until past Christmas before any appreciable length of hair will be back – well I didn’t want to deal with no hair all the time for that much of the year.  So I met with a hair salon that focuses on hair loss and tested out a number of versions of wigs.  One was really funny – it was a platinum blonde version of the old Marlo Thomas flip!  Obviously not a winner but great for humor.  The one I selected will be in shortly, trimmed to work for me, and be worn when I go out in public and feel the need to use it.  Many fellow cancer treatment travelers have told me they seldom wore them after getting their wigs, but I wanted the option.  At least I will have options – something I don’t have right now other than different chemo caps.

The basement situation is being worked but seems like ever-so-slowly.  We’ve found a contractor who has room in his schedule to do the floors.  He’ll start right before my final chemo.  We have to be out of the house for a minimum of 2 days [dogs to Pet Hotel, us to a different one] because of fumes from the mold reduction work…..but that will give us a little break, too.  And the huge trees out front are finally gone – we are getting sun in the windows at the front of the house for the first time [not blocked by the huge pines]. 

I’d like to thank everyone who has been a supporter so far on this path, whether it’s been meals, gift cards for meals, offers for cleaning support, chemo caps or packages from cancer-support agencies – can’t thank you enough!!!  The amount of help has been overwhelming to me, unexpected but oh so appreciated!  I’ve been able to cook, shop, keep up a little with the cleaning, do laundry and work, but at my pace, which helps since Noel’s still trying to get all of the tests done to handle dealing with his broken vertebrae and other issues.  Cory has been helping, handling her own parts as well. 

Eye’s on completing the chemo [last round is June 17th] an MRI on the 21st.  Still working to Kick Cancer’s Butt!

 




Cancer Chronicles – Book 2 Chapter 11

6/28/21


CHEMO is DONE!  As of 6/17!  YAY!!!

I waited until today to write an update because I wanted to get more information and not do multiple posts.  The final chemo went well, as it has in the past – no bad reactions.  I purposely did NOT ring the bell there because I wanted to know what the CAT Scan was going to say, as well as the doctors, for next steps.  Took a photo of it, but really didn’t want to ring it – felt premature.

CAT Scan was on 6/21 – had to wait until last Thursday for the results to post in the online chart to read, and until today for a meeting with the gyn-oncologist to determine next steps.  The report shows “No Evidence of Disease” – Happy Dance Time!  However, I will have to get follow-up radiation to really seal the deal, or as the doctor put it, “Throw everything as well as the kitchen sink at it”.    I have another appointment looming with the radiology doctor to discuss those treatment plans.

I asked how they can do radiation when there’s no evidence of disease……didn’t make sense to me.  Felt like we were just aiming at ‘nothing’.  With this type of cancer, she explained, you can choose to do the radiation at all of the ‘likely hiding spots’ to make sure it’s not there hiding in miniscule amounts.  If left to grow big enough to be seen, it would be traveling [metastasizing] and become harder to eradicate.  This specific cancer, if it metastasizes, doesn’t have good outcomes at all.

So we are throwing the kitchen sink at it to make sure we KICK IT!

My hair is supposed to start growing back in, slowly, in a few weeks.  Really can’t wait for it to be back but it’s supposed to grow slowly after the chemo. I have gotten a wig for being in public so I am not so self-conscious, and getting something else to look like I have hair for our trip to Orlando/ Disney World in October.  That trip got the green light as well, from the doctor.

Meanwhile, we were able to go to 2 concerts this past weekend [Fri. and Sun.] so socializing is doing my heart good.  And the basement remediations are underway, a little slower than we’d like but making progress. 

Baby steps, but still progress.

More updates after the radiology appointment. Thanks for all of your support - it really means a lot to me. 

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