last Sunday thru today

As I was saying, last Sunday afternoon my rear end was still a bit achy, but I was gettin’ ready to go to the wedding in Raleigh!

Then Sunday night, out of the blue, with like 20 seconds warning, I threw up! Gross, yes! I did make it to the sink in time, so not too, too bad. I was shaking afterward and thinking, okie dokie, no way I can get on an airplane. Called my sister to say she’d have to attend our nephew’s wedding solo.

Then, Monday I felt unusually okay. Same Tuesday … I felt pretty darn okay.  So, I actually did get on a plane Wednesday and flew to Raleigh. The wedding was SO, SO MUCH FUN, and I even drank a glass of champagne : )  
  Haven’t thrown up since last Sunday.  

Life and vomit are unpredictable.

Onward!

Oops

Apologies.  Last post I said that I was going for an MRI to see if radiation could help my symptoms, since I want to attend my nephew’s wedding.  Once the MRI was all scheduled, my symptoms GREATLY improved!  For FOUR days I almost felt normal.  So, we canceled the MRI.  Yay!
Day five, of course, symptoms back, Murphy’s law and all.

So, no MRI in October, but I did spend this last Thursday at DF.  Just the regular routine:  blood work, docs, shots in the butt.  Blood work again was not good; numbers, again, way up.  But we’re giving the butt shots a little more time to work.  Actually, who knows, maybe the shots are helping even now — my numbers could be worse.  When I asked Dr Eric he said that, no, the numbers do not tell us how much longer you will live.

So today is Sunday.  My rear end is still a bit sore, and I am almost packed for the wedding.  I leave on Wednesday.   : )

lipo?

I sent an email to Dr Eric today, explaining that my stomach is now USUALLY queasy, or bloated, or burpy, or all of the above. (I’ve never been a burper before.)  Energy level also worse. 

I asked if radiation is an option to temporarily reduce the tumors so they press less on my stomach. 

Also asked, isn’t there something like liposuction for cancer?  Oncosuction maybe?   Ya know, a little cocktail-straw sized pipette, a little suction, and voila — I can attend my nephew’s wedding in November without throwing up! 

He replied, come in this Thursday and we’ll do a scan to see if radiation is possible.  Lipo? … no.

Fine.  See you Thursday. 

Advantages

Thursday was, yep DF, and my blood work unfortunately was telling … numbers way up. When we’re young,  in school, high numbers mean good grades and kudos. When we have cancer, high numbers make it feel like I’m failing my class. Must’ve forgotten to do some homework, or missed a test, or not eaten enough turmeric!!!

But there are some advantages to this stage in my life. Like how FANTASTIC sleeping feels — nothing like a good 14-hour night of sleep! I never could’ve done that ten years ago : ) And my hair has been looking GREAT, if I do say so myself. After chemo made it fall out three years ago, it does not take perfection to look awesome to me. And while I still exercise regularly, sometimes now I’ll let a brisk walk count as a workout. For the most part I do not have much pain, and ibuprofen is all that’s needed (lots of ibuprofen).   When I feel queasy I eat my FAVORITE food, toast!  Yes, ADVANTAGES!

There are times, more frequent now, when I think about my life ending. I get teary and have many sad days, but because I was with each of my parents at the ends of their lives, I’m not particularly scared. As I’ve mentioned before, I’m not a religious person, but I have been wondering more about the possibility of ‘something’ existing after death.  In a very odd way, my deceased parents feel closer to me now … physically closer. Very odd.

Here’s a pic from last night when I went out with my daughter and god daughter for dinner. So much fun! 

Still having fun. Pasta dinner on Federal Hill, Providence

As usual, onward.

1997, 1998

In February of 1997 I was admitted to Women & Infants Hospital in Providence.

The time preceding that February is important. My husband and I had been trying to get me pregnant for TWO years. Month after month, negative pregnancy tests. Because I was 36 years old, an age when women’s fertility starts to decline, I underwent lots of testing. I had chunks of my uterus chopped out and examined — looks like it should be working just fine. Blood test after blood test. Daily temperature checks. Everything looked okay, but still no pregnancy. I/we went as far as doing an artificial insemination: my husband’s sperm was put into a centrifugal force spinner, then sorted to pick just what was needed, and then, with basically a turkey baster, inserted into my vagina … while I was lying ALONE on a cot in an office somewhere I can’t even remember. I do remember crying during this procedure. (Oh, and all this was a month after I read a news article about a fertility doctor who had used his own sperm to inseminate his women patients! Scream!)  No pregnancy resulted from my procedure.

I had read about women so desperate about their infertility that they stole other peoples babies. Other stories described infertile women crying hysterically, to the point of being public nuisances, at the sight of babies. I knew I’d never be THAT desperate, but one day when leaving a supermarket, I did indeed cry at the sight of a mom cuddling her newborn in a shopping carriage.

My husband also had some testing done and decided to go ahead with a minor surgery that might help our situation. It did. After two agonizing years my pregnancy test was positive.

Since I have diabetes I was considered a high risk pregnancy from the start. I pricked my finger and tested my blood sugar constantly and did everything I could to keep my body as perfect as possible for the developing embryo.

Monday, February 24, I started to not feel great … my friend nausea was saying hello. No problem, I can handle morning sickness! I kept plain crackers with me, but within a day the vomiting began.

By Wednesday I was throwing up every hour.

Thursday I called my OB/GYN … she said to go to the hospital IMMEDIATELY. 
When I arrived, the nurse said with great authority and experience that I’d be out within two or three days. This was a huge relief because by this time I was incredibly weak and still vomiting every hour. Because I was so dehydrated, it took three different nurses to get an IV into my arm … the third nurse specialized in putting IVs in infants’ veins. With the IV in place they started my first anti-nausea medication.

By Friday the vomiting was worsening – now every half hour. It was beyond miserable. I was not allowed to drink water (because that would make the vomiting worse) so my whole esophagus was burning and raw. When I vomited only green stomach acid came up. The doctor switched me to a second medication since the first was clearly not helping.

Saturday, after a day with the second medication, the doctor switched to a third choice, which was a VERY painful injection (in the rear end of course). This was at 2:30 in the morning and I was in such agony, so weak, and so sleep deprived I did not feel human. The screams that came out of me during the injections were very human though. Throughout all of this I was trying to control my diabetes, my blood sugars. On that Saturday alone, I pricked my finger 19 times to check my blood sugar. If it was high or low I depended on the nurses to adjust the flow of glucose going into my veins through the IV. Sometimes they were prompt and available, other times not. I was physically and mentally exhausted and exasperated.

Sunday the doctor wanted to give me another shot of Compazine in the rear but I wasn’t sure I would be able to survive the pain a second time. Instead, my husband drove to a pharmacy 45 minutes away because it was the closest place that had Compazine in suppository form instead of injection. By Sunday night after the second dose, it was clear that the Compazine, like the first two meds, was also NOT working. The next medication to try was Ondansetron, which was described to me this way:  It hasn’t been tested on pregnant women for safety because it is unethical to test drugs on pregnant women, but we THINK it is safe for the fetus. So now in addition to my own miserable situation, I had to consider the possibility that the medication I would take could harm the embryo I had wanted for so, so long. The doctor convinced me that it was a good bet, and at 8:00 PM I got the first dose.

Monday morning, another dose of Ondansetron. Miraculously I started to feel better. I didn’t even remember what it was like to not feel sick. It was extraordinary, and, the doctor even let me order a meal, lunch, !!! my first food in a week! It tasted glorious. Then, between lunchtime and evening I threw up 7 times.

Tuesday, another drug to try … also not tested on pregnant women but PROBABLY fine. It was Thorazine, an anti psychotic which can also be used for severe nausea/vomiting. The problem with Thorazine is that if you are NOT psychotic the side effects include dizziness and loss of balance. Since my husband was with me, I felt bold enough to hobble to the shower with my IV tether. Once in the shower, I passed out and crumbled to to floor hitting my head and back on the shower walls on the way down. My husband heard the noise and came running. He later told me that he thought he was watching me die – my eyes were rolled back in my head and I was colorless and motionless. The nurses got smelling salts under my nose very quickly, I woke, they got me back into bed. My husband and I decided that I had to terminate the pregnancy.

Wednesday was the operation.

Thursday I went home.

 
. . .

 

The following months were very dark … the despair and emptiness profound. Friends and family were helpful but they seemed to occupy a different world from the one I was living in.

By summertime my husband voiced that he wanted to try pregnancy again; I was horrified … at first. Then slowly, self-talk kicked in … every pregnancy is different … no way another one could be as bad. We both did research about hyperemesis and met with doctors about ways to prevent it from happening again. One year after the first time, I was pregnant again.

The second time the nausea hit even earlier in the pregnancy, and it was worse. The second time I was in the hospital for only three days instead of eight. And for a second time I despairingly ended a pregnancy. Afterwards my emotional state was worse than after the first, which I did not think possible. I spent many years talking with a therapist, who specialized in fertility/pregnancy issues. It took fifteen years before I could talk about the pregnancies, without sobbing.  I’ve never written about them before now.

Butt shots

Well, that title could mean several different things. I’m referring to my latest ‘treatment.’ Since estrogen failed so miserably to help over the last few months, ah hem, we’re hoping that at least it did manage to cause some ‘confusion’ for the cancer. Last week I got two shots of Fulvestrandt in the buttocks, which is a treatment I had many years ago when I was still a newbie at metastatic cancer. Back then the shots worked for a while so we’ll see what happens now. Maybe my confused cancer has forgotten that it already figured out a work-around for the medicine.

Like the estrogen treatment, using Fulvestrandt injections a second time is a shot-in-the-dark; because I have decided NOT to do any more chemotherapy treatments, there’s a very short list of options.

Recently I’ve seen a few friends I hadn’t seen since pre-pandemic. First thing out of their surprised mouths, ‘You look great!’ (They know my cancer status because of this blog.) Even Dr. Eric said pretty much the same thing last visit, “With your outward appearance and demeanor, people would never guess how much cancer there is inside you.” Okay – those weren’t his exact words, but it was the gist. It was in a funny way, a compliment.

I will continue to write about this journey of mine, but not up until the end. I have a planned conclusion for this blog. It would be super awful to keep posting and have my final entry be, “Not feeling great today, so taking just a teeny bit extra morphine ….”    : )

Got a few things to write about before that happens. ONWARD!

Hey

Several people have asked me if I blog to keep friends informed or if I do it for myself. The answer is … both.  Which leaves me confused sometimes … is this post for others’ eyes, or for my head?  In the end I don’t think it matters too much.


I’ve now had this metastasized cancer for 11 years. Some of you might be thinking, does she actually have cancer or is it a case of phantom cancer?  I promise, although I have indeed lived longer than most, I do have cancer.  The tests and test results are real.  And last Thursday up at DF I had CT and MRI scans as well as the usual blood work.  (Plus 5 extra tubes of blood for the research people, which I LOVE donating.)  Results: tumor markers both doubled and scans showed MUCH more cancer on both the liver and sternum. I mentioned to Dr Eric that three months ago he had estimated I had between 6 and 12 months to live: do I now have 3 to 9?  He said, well, let’s still call it 6 – 12  but it’s unlikely you will make it to 12.  It was a really sucky day.


In August I turned 61 which means two things.   Thing #1: I’m officially old. When I look through alumni magazines I don’t even read about the people over 60 who died! They were OLD anyway. I read about the younger people who passed away.  So fine, no one will read about my ‘going’. Thing #2: at age sixty TWO, a year from now, I could start getting social security. I really, really want a social security check, and I’ll probably miss it by like a month! Now, because of diabetes I always figured I’d be gone by 55, but now to get soooo close to a social security check, geez.


And about my obit … please, don’t anyone let it be written that I ‘battled’ cancer. I hate that metaphor. I prefer to think I’ve been doing a dance with my cancer. A nice, heart thumping tango. Cancer can do the final dip when it’s time.

Onward!

So many Thursdays

 

FIVE Thursdays ago were my scans with the not-so-great news.  


FOUR Thursdays ago was my biopsy. (The procedure was a breeze – oh, except for the fact that they did not give me enough anesthesia … but after I screamed OOOOWWWE I think they upped it).  


THREE Thursdays ago I met with NP Jen and Dr Eric who reported that the biopsy showed my cancer has remained very strongly estrogen-receptor-positive (meaning it eats estrogen to grow).  That’s why 11 years ago my ovaries were whisked out of me.  Followed by years of treatments to squash any remaining  specks of estrogen produced in my body.  It’s all been sort of successful — I’ve survived a pretty long time doing everything that was recommended.  So guess what the recommendation three weeks ago was?!!  Give me ESTROGEN as a medication.  What the #$*%? 

The explanation?  Well, it seems that if we “perturb” the hormonal environment of the cancer, it confuses the cancer for a while and can help.  So we are currently perturbing/confusing the cancer with its favorite candy.


My personal tactic is to confuse it with tequila. Seems just as valid.

I have prodded Dr Eric with ‘the question’ and he estimates that I have between 6 and 12 months to live. 

The weeks since my last post have been busy! Filled with visits! Friends’ visits. This is great fun of course, because I have awesome, brilliant friends (each of whom seems to be worried about getting to Providence before I kick the bucket : )  We have all been laughing out loud a lot.  THAT will confuse the heck out of the cancer.

NEXT Thursday back to DF for the usual … blood work and chatting.

Radiologists

A few years ago I read something that has stuck with me. Radiologists were discussing their jobs and how they never actually met patients. They just looked at scans of patients which made them quite removed from the actual situation … they could say things to each other like, whoa look at this tumor … someone should tell this guy not to buy the extra large tube of toothpaste next time.  I chuckled … oh those doctors.

Last Thursday was another Dana Farber day for me. Started with a blood draw, then an MRI, followed by a CT scan, then to the doctors, with chemo scheduled for the end of the day. Whew. But by the time I met with my NP Jen I had already been able to read the reports from the morning bloodwork and the scans. The MRI scan provided the worst news. The cancer is growing. Unmistakably.

Chemo for the afternoon was cancelled (… it’s simply not helping). When I spoke with Dr. Eric about choices moving forward, he offered up another type of chemo and also suggested for the first time that no more treatments was an option. I nixed the chemo idea, and we decided to schedule a biopsy (of the cancer that is on the liver). It is very unlikely that it will yield clinically useful information, but what the heck, I’m not doing anything else next week.

Two things:
(1) I DO hope that the radiologists looking at my scans had a giggle about toothpaste.
And (2) I really wish I had remembered to take a selfie that day — it was a really good hair day!

Will keep you posted. Onward!

May the 4th (be with you)

Apologies for such a long gap since last post. 
A few random thoughts and photos …

VACCINE:
I got my second Covid vaccine back in March.  Only spent one day in bed with side effects … exhaustion and nausea – because of course, if nausea is listed as a possible side effect my body says, oo oo over here, I’ll take that one, I’ll take the nausea!

CHEMO:
Last week was my 4th Doxil chemo treatment. Here’s how it goes in pictures (lots of waiting involved):

blood draw waiting area – 2nd floor
waiting area for vitals – 9th floor
exam room – waiting for docs
waiting for chemo – 9th floor
chemo!

Today is May 4th and the nausea is not terrible.   
So maybe the force is with me!?!

BACKYARD:
Lilac trees in the backyard are gorgeous this week!

VISIT:
Since we are both vaccinated now, my sister came for a visit last week.  It was super fun but it felt like there was some strange force surrounding us.  First I managed to gash my shin while we were simply putting sheets on Kristen’s bed.  Later my phone went flying into the cat food dish.  Then my dinner fork went flying into my water glass.  The kitchen pillow flipped  into the cat food bowls (again!), and my phone went flying across the kitchen floor at least twice.  It all looked like a slap stick routine.  Chalking it up to being alone and isolated for so long — not used to more than one person’s energy in the apartment.   

 

ONWARD!

Quick Updates

  1. Covid vaccine
    This Tuesday I’m scheduled for my SECOND vaccine shot.  The three weeks between shots — have felt like three years.
         
  2. Chemo/Nausea
    Monday was AWESOME … no nausea!  Such relief! 
    Unfortunately on Tuesday I woke up queasy.  Mild though, maybe a 3 out of 10 on the nausea scale..  The queasiness stuck around, off and on, the whole day and evening.  Wed, Thu, Fri too : ( 
    Not terrible nausea … nothing like the ten days last month.  I can live with this, I keep reassuring myself : )  

  3.  Car shopping
    Tuesday I remembered that I DO need a car, that works.  So, queasily I went shopping.  It was EXHAUSTING, but I succeeded … I bought a car.  Wednesday morning when I picked it up, it struck me that it was actually sort of fun to have a new, working car.    
    new little car

     

So much time, so little to do

We’ve all been waiting, waiting, waiting. Waiting FOREVER for the damn pandemic to be over. Last year at this time I thought, okay, I can do this isolation thing.  It’ll be fine. I can have groceries delivered. I can shop online. No problem.  Thank goodness for the internet, I can do this. Thank goodness for Zoom. 
But then, it kept going on. And on. And on. So much time, so little to do.
Occasional, inaudible screams have been fluttering from my brain.


On February 23 I got my first Covid vaccine. I had no idea that I’d actually be giddy — seeing the needle go into my arm was like a first sighting of light at the end of the tunnel. I wanted to dance down the corridors singing Hallelujah! (I resisted.) Now, there’s a bit more waiting – the time between first and second vaccine shots, and then two weeks before immunity fully kicks in. This waiting time includes something new though, a smile on my face as I make a mental list of all the things I will do. (IKEA, CVS, WFs, … all the trips that used to feel irksome will now be filled with joy, FOREVER.) The thought of picking a box from a store shelf, feeling its weight, reading the ingredients, and MAYBE, just maybe, putting it back makes me shiver with delight.

Three weeks ago I mentioned that my first chemo treatment (with Doxil) ended up being rather tough. Ten days of nausea and vomiting. BRUTAL. I am hoping that the sickness was not caused by the chemo but rather by my withdrawal from my previous meds — which could be true. I’ll know in a few days. I just had my second round of Doxil chemo on Thursday. Most chemo related nausea happens within a day or two, however last month it happened on day 4 for me. Again hoping for the other explanation — not sure I can go through 10 days of nausea and vomiting each month. Cross y’alls fingers, please. Monday will tell.

Now I have to go buy a new car. SCREAM! I don’t want a new car. My current, broken car should’ve lasted for the rest of my life, but I keep on living longer than expected.  It  gave up. So irritating. Gives me zero pleasure to buy a new car — I don’t even like cars.  And the current car broke down on Thursday, my chemo day, of all the nerve.  THAT added a bit of stress to a day that did NOT need extra. I do need to have a car to drive to my second vaccine appointment. What should I name the new car?  COVID?  Chemo?  Any other suggestions? 

 

Scottie

Beam me up Scottie!  This was not on the excursion plan.  Day seven now of nausea/vomiting.  NOT on the plan!  
Beam me up … and have Dr. McCoy standing by.

Kool-aid

As forecast, I started a new treatment regime on Thursday.  The chemo is called Doxil (doxorubicin).  This is the treatment that was advertised to me, by my doctors, as easy peasy.  Truth is, yes  … compared to the last chemo I was on.  Since my first session was scheduled last minute the layout of the day was not great … start, with an echo-cardiogram at 1100, and end the day with chemo at 3:30, which we all knew wouldn’t happen until 4:30 or 5:00.   LONG DAY.  So, I planned accordingly and booked a hotel room a block away from Dana Farber.  (I really, really don’t like driving in the dark , and right after my first chemo?  no thank you!)

The echo was fine.  Then blood work, fine.  Then doctors.  Then chemo …  yep the pharmacy was backed up so my treatment started at 500, not 300.  Nobody’s fault.  The actual chemo  liquid going into my vein was a bright orange-red, or, Kool-aid colored as Patricia, my nurse, said!   

Kool-aid colored chemo

 

And I had a corner office, so the view was grand …

chemo view from DF

 

Chemo went just fine.  No immediate bad reactions (which can occasionally happen).

I got to the hotel room at 6:30 — relieved not to be driving home.  I am a worrier however, so rather than worrying about a traffic accident, I spent the entire night worrying about catching COVID from ‘something’ in the room. 

Friday morning before driving home, I got a bonus quick visit with my daughter!  Yay.  Yesterday and today …  eh, a little mild nausea (nothing a bowl of dry cheerios can’t fix) and eh, a little bit of exhaustion (nothing two 2-hour naps a day can’t fix).  So, I’m doing just fine.  Easy peasy as advertised.  

I am eternally grateful for the care I have received over the last decade, and my entire privileged life.

ONWARD!

Onto new meds

THURSDAY · JAN 28 · 2021 
800am — 1/2 mile east of DF – MRI of abdomen. 
930am — 1/2 mile south of DF – CT scan of chest. 
1030am — DF 2nd floor – blood draw. 
1200pm — DF 9th floor – vitals.
1230pm — (actually, more like 230pm) — DF – Jen and Dr Eric. 
The best part was that my fit bit logged all this racing around and counted it as a full day of exercise!  I got a bonus day-off.        

Scans showed that, yep, my recent pain was that pesky cancer again.  I had been hoping for a cracked rib.  Have you ever had sneeze pain, like from a fractured rib?  You sneeze and think, oh, just-kill-me-now.  I had that pain ten years ago, when the cancer first appeared on my sternum, but when I started treatment the pain magically went away.  Recently however, the cancer on my sternum has grown something like a billionth of a millimeter — and this minute adjustment makes me beg for mercy if I feel a sneeze coming.   

So, the good news is that I get to stop my current meds. 
Other news, next Thursday I start a new course of chemo.  This particular chemo has been described to me as about as burdensome as drinking a glass of water.   Will let you know!

Onward!