(19-05-11) Chemo Problems

My last day of pelvic radiation went off without a hitch. The fatigue side effects will soon dissipate, although since I do have brain radiation all next week, I might end up feeling just as exhausted and weak for a few more weeks to come. I’m also curious to know whether I’ll end up getting that radiation sunburn like I did last time. With that last time of breast radiation, it was during the third week of radiation that the sunburn developed, so I guess we’ll just have to wait and see….

I met with Dr. Patel, my radiologist, immediately afterwards. There were a few worthy points:

  • She said my brain tumor was 1.7cm x 1.6cm and had settled near my hippocampus. In Mexico, Dr. Rubio said it was 1.2cm and resting near my occipital and frontal lobes. So it is definitely growing and moving around, which explains my changing symptoms.
  • She said that the radiation right now is not to shrink tumors, but actually deal with pain management. I’m in so much pain right now that statement seems laughable, but I know that my pain is mostly from my edema.
  • She also said that Dr Curley will decide if I go back to radiation for any other spots on my body later down the road.

So… Radiation was easy. Chemo today was not. I stopped counting at 7 but they basically spent an hour trying to find a vein where they could draw blood. They like to have a full blood panel before chemo just to make sure there aren’t going to be any problems. Unfortunately, they couldn’t find a vein because I’m so swollen with edema that the needles that were actually making it in to my skin could not draw any blood, only edema fluid.

They then told me that I couldn’t have chemo if we couldn’t do the blood draw. I threw a goddamn fit, turned into bratty non-compliant patient Tarah, and basically made so many arguments and refused to leave until I got chemo. I eventually won, but damn, that was quite a fight.

Next week: five days of brain radiation.

(19-03-04) A Crappy Day – Pun Intended

3:32 am.

I awake with a start at the all-too familiar feeling of something moving around in my left knee. The cancer cells are on the run. Within three minutes, I’m already buzzing for the nurse. Gotta try to stay ahead of the pain this time.

The Spanish-speaking Sunday nurse takes her sweet time getting to my room. I’m guessing i probably woke her up, so almost ten minutes pass before she opens my door.

“Tarah?”

“The pain has started. It’s in my knees.”

“Pain?”

“Yes, pain.”

“Estomago? ”

“No, joint pain.” I point to my knees.

“Oh, okay,” and she leaves.

I expect her to come right back. With every passing minute, the pain intensifies and travels, moving along my left elbow, hand, and foot. The tears flow, and my moans are probably waking up the patients across the hall. Five minutes pass, and i press the buzzer again. I know i am being impatient, and I simply don’t care.

At 3:54, she brings me a shot of pain medicine, then leaves. I settle into a breathing activity to push through the pain and return to sleep … which works for about an hour.

5:05. Again, I wake with a sudden start from the jolt of joint pain. I knew that shot wasn’t going to cut it, but the weekend staff doesn’t understand the magnitude of this pain. By the time the nurse returns to my room, i am sitting in a pile of my own shit, rocking back and forth crying. I had literally shit myself, needing to go to the bathroom but unable to stand up due to the amount of pain in my feet, at this point. I don’t tell the nurse about the mess in my bed – partly because all i can focus on is the pain and partly because i am beyond mortified. Instead, i just lay there in fetal position, silently crying and slowly rocking while she hooks me up to a drip bag that contains more pain medication. When she leaves, i continue rocking, crying, and deep breathing for about a half an hour before the pain subsides enough for me to get out of bed and clean myself up. By this time, it’s after 6. I rinse myself off and then strip my bed. Laundry facilities are only open to the patients from 4pm-7am because the cleaning crew needs them during the workday (and i have already pushed my limits with this timeframe twice since i have been here). I attempt to run the bedding and my robe downstairs to at least get them in the washer before the staff get there, but i am too weak, and i buckle under the weight of all the linens. So instead, i throw the smelly pile down into a corner of the room, move over to the spare bed, and curl up in defeat as i wait for the pain meds to take effect.

* * *

That was how my day started. It really didn’t get much better from there. The day itself was filled with low appetite, non-functioning taste buds, cotton mouth, fatigue, head fog, weakness, a sore throat, nasal drainage, diarrhea, abdominal cramping, heavy sweating, and – according to Blanca – yellow skin. Luckily, the joint pain never returned for another round, and the cleaning lady took the soiled bedding from a very embarrassed me to launder. And now, it’s 11:35pm. The idea of (1) waking with a start to more joint pain or (2) defecating on myself again has me afraid to go to sleep… but my eyelids are heavy, and falling asleep brings me one day closer to going home.

And I*really* want to be one day closer to going home.

(19-03-02) Mini Rants

I am convinced my physical and mental states have deteriorated so much this week as a result of the cumulative effect of all the treatments i am getting. When i first got here, they dosed me exclusively with immune-boosting drip bags, building up my body to prepare for the fight ahead. (Sigh – i was feeling so invigorated then!!) From there, they introduced two of their standard cancer vaccines – nothing too serious yet – then one round of chemo. Now, though, as Week 6 comes to a close, my body is juggling four different vaccines and four different chemo drugs every week … and it’s running out of steam. Add sleeplessness, unsatisfying food, very uncomfortable body swelling, and official homesickness, and yeah: Grumpy Tarah is out on the prowl. Big time.

Dear Blanca,

You are, by far, my favorite nurse here. With that said, if you come in my room one more time and deliberately wake me up from a nap for no good reason, i might bitch slap you. No, i don’t want dinner. Yes, i know i have been sleeping all day. I’m fucking tired. I’ve been up since 2:30 and on the toilet since 4. Go away. Stop telling me to go downstairs and get dinner. Look at my stomach. Does it look like it needs food right now? It can eat the gas and the feces in there, for all i care, and wash that meal down with all the fluid retained from the drip bags. … Are you seriously not going to turn the light off when you leave? Blanca, do not TEST me today.

* * *

Dear Nahaliel,

I’m pretty sure that it’s your fault i feel extra shitty today. Saturday is supposed to be one of the two days in the week that i don’t experience any symptoms … yet here i am, clammy, exhausted, body-heavy, with a sore throat and extra mocos in my nose. Yesterday, you were supposed to come take those magnets off of me after two hours. You forgot, and i fell asleep waiting, and those magnets were left on my body for almost three hours. I don’t think that’s going to end well, especially since Dr. Rubio, Sr. told me that he caps those magnets at two hours for anyone. I’m a little nervous about the pain that’s going to hit tomorrow now, but you won’t even be at work tomorrow for me to take my frustration out on you, dammit.

* * *

Dear Dr. Smith,

While I do want to thank you for FINALLY getting me those itemized statements after i hounded you for over a month, what the hell am i supposed to do with a 22-page hardcopy edition? Do you see a scanner in my bedroom? There was a reason i asked you to email me this documentation. I swear you did this on purpose. I thought paying for your stupid tacos the other night would have worked as a subtle peace offering – apparently not. You’re welcome, by the way. Guess I’ll be back in your office on Monday night… You can’t get rid of me that easily. I’m just saying – if you dislike me as much as i feel you do, you should just give me what i want the first time around so that i leave you alone.

* * *

Dear Botas,

Stop fucking scratching that one wall. You are literally peeling the wallpaper off. If i have to pay to get that wallpaper strip replaced, I’m gonna toss your ass back out on the street. You have toys. You have a hamper and a chair you can claw. I know you need a damn scratching post; I’m trying to find you one. In the meantime, show some restraint. Are you seriously attacking my foot right now, as I’m ranting about you? Are you serious? How’s this water bottle blast feel right about now? Yeah, run away. You be working my nerves too, today.

* * *

Dear Weather,

Can you PLEASE not rain again tomorrow morning? I’m going stir-crazy in this room, and my window of opportunity for walking tomorrow is going to be minimal – especially since Nahaliel left those magnets on, and i don’t know what time that joint pain will hit me. Please take pity on this miserable White girl from AZ and just hold off on raining until later in the morning. I know the forecast says there is a 40% chance it will be raining by 7. Please. Work with me here.

Sincerely to all of you motherfuckers,

Tarah

(19-02-09) My Immune System

An old college friend noticed from the blog that I’ve had visitors here, and he raised a good question that some of you might also have wondered:

“…you can be around other people – you don’t have any chance of catching a cold or bug from other people?”

That question makes sense if you’ve ever been around someone going through cancer treatment in the United States. Chemotherapy wreaks so much havoc on your immune system that there are periods of time when self-isolation in a heavily sanitized room is the only thing keeping you out of the hospital. I remember one time my white blood cell count dipped below 1.0, and I couldn’t go to treatment, work, the store, or any place involving other people and their germs.

Here, though, they use immunotherapy, which means they supercharge my immune system with vitamins, nutrients, and stem cells to make it stronger in battle. I feel completely healthy here. I am able to get by on 4-5 hours of sleep each night, without ever feeling groggy the next day. I take hour-long power walks every morning around the city. My body doesn’t ache when I get up in the morning, and I haven’t been bogged down with any cold symptoms like I used to get during chemo. I mean, aside from this pesky little burden of metastatic breast cancer throwing tumors out all over my body, I’m kind of a pinnacle of health right now. This is what we *should* be doing to our bodies, when we have to wage war against cancer cells that show up to battle. Unfortunately, the United States just doesn’t see the benefit in making us a healthier nation – not when there is so much money to be made in keeping us all sick.

(19-02-03) – Explaining the Pain

Yesterday was awful, and when I woke up at 12:15 this morning with shooting pains in my stomach, I thought today would be a repeat. It hasn’t been nearly as intense today as it was yesterday, but I am still mostly lying around in bed, rocking myself while in fetal position and reminding myself that my skin will break out if I don’t stop crying. Dr. Godinez said I should have about four more days of this pain. Anything past that will require me getting taken to a hospital in San Diego for an ultrasound.

According to Dr. Godinez, a combination of factors is causing the intense pain in my stomach. The smaller issue is that having enemas twice in one week likely caused inflammation in my intestines, which is why I was getting such intense pain in my lower stomach, below my belly button. For now, we’re going to hold off on doing any more of those, and I will walk to the grocery store in a couple days to try to find foods with more fiber. They also said they could give me pills to keep everything regular, but I prefer to use food, not technology, to handle this process.

The sharp pain underneath my right rib cage is a direct result of both the vaccine and chemotherapy. While smaller meds typically get broken down in the kidneys before the body disperses and eliminates them, larger meds (like chemo drugs) get broken down in the liver. The liver produces this orange-yellow substance called bilirubin, to help digest things like greasy foods (or, in my case right now, chemo drugs), and the gall bladder is the container that kind of houses all this stuff during the process. As both the vaccine and chemotherapy do their thing in my body, my liver and gall bladder are getting a pretty active workout, and that’s why they’re both screaming in pain right about now. It’s all part of the detoxification process.

Side note: Dr. G assured me that this pain I feel is NOT the result of all the tequila I consume on a regular basis. That helped me feel a little better about myself. ūüėČ

Other side note: One of the Mennonite moms stopped me this morning just outside the laundry room to ask me if I was feeling better today.

“Better,” I said, “but not good.”

“Well, you didn’t look good AT ALL yesterday.”

Bitch, don’t you think I know that already?

Of course, I kept this last comment to myself and chalked it up to inferior Mennonite social skills…but I’ll be spending these next few days isolating in my room until I’m ready to go back out there in shorts and a tank top, just to antagonize them. ūü§≠

(19-01-29) Weekly Regimen

It took me an entire week to get my schedule down, but I think I have got it.

MONDAYS, WEDNESDAYS, & FRIDAYS

  • 8:00 – nebulizer
  • 8:20-8:40 – eat breakfast, with freshly squeezed orange juice
  • post-breakfast – morning meds: multivitamin, B17 vitamin, and two anti-cancer drugs (Arimidex and Talidomida)
  • 8:45-10:00 – chelation therapy
  • 10:45-1:45ish – drip bags of amino acids and electrolytes
  • 12:00-12:30 – eat lunch, with cuachalate tea
  • 1:00 – coffee/mushroom/shark cartilage enema
  • 2:00-2:30 – ozone therapy
  • 2:40-3:40 – cabbage therapy
  • post-cabbage – take a shower
  • pre-dinner – daily check-in with Dr. Rubio, Sr.
  • 5:00-6:00 – dinner, with electrolyte tea and/or ozone water
  • 6:00-12ish (Mondays and Wednesdays only) – 3 bags: stem cells, cancer vaccine, and meds (antibiotic, antihistamine, and pain med)
  • 6:00-2:00ish (Fridays only) – 2nd of 4 chemotherapy meds
  • 8:00-8:20 – nebulizer

………………………………………………………….

TUESDAYS

  • 7:45 – blood drawn, to be mixed with cancer vaccine for next week
  • 8:00 – nebulizer
  • 8:20-8:40 – breakfast with freshly squeezed orange juice
  • post-breakfast – take meds
  • 8:45-10:00 – chelation therapy
  • 9:15 – lymphatic foot bath
  • 9:45 – Rife therapy
  • 10:15-3:45ish – drip bags with amino acids, minerals, and electrolytes
  • 12-12:30 – lunch, with cuachalate tea
  • 1:14-1:45 – ozone therapy
  • 1:55-3:00 – cabbage therapy
  • post-cabbage – take a shower
  • pre-dinner – daily check-in with Dr. Rubio, Sr.
  • 5:00-5:45 – eat dinner, with ozone water and/or electrolyte tea
  • 6:00-12ish – 3 bags: stem cells, cancer vaccine, and meds (antibiotic, antihistamine, and pain med)
  • 8:00-8:20 – nebulizer

………………………………………………………..

THURSDAYS

same as Tuesdays, except I get one of my four chemo meds at night

……………………………………………………………

SATURDAYS & SUNDAYS

(basically, no cabbage, foot bath, enema, or Rife therapy treatments; no vaccines; no blood draws; and no daily check-ins with Dr. Rubio, Sr.)

  • 8:00 – nebulizer
  • 8:20-8:40 – eat breakfast, with freshly squeezed orange juice
  • post-breakfast – morning meds
  • 9:00-6:00 – drip bags of chelation therapy, amino acids, minerals, and electrolytes
  • 12:00-12:30 – eat lunch, with cuachalate tea
  • 2:00-2:30 – ozone therapy
  • 5:00-6:00 – dinner, with electrolyte tea and/or ozone water
  • 6:00-12am – chemotherapy
  • 8:00-8:20 – nebulizer

(16-12-08) Chemo complete

It’s been a year. ¬†One year: 18 chemotherapy sessions, 36 bags of poison¬†injected into my port, and 48 hours of sitting in those Lazy Boy recliners and staring out the same window.

But i made it.

On my last day, i deliberately sat in the same recliner that i sat in at my very first session.  It felt fitting, to close this chapter of my life the same way i opened it.  Of course, my head space was way different today.  Today, i bounced into that office, greeting everyone who looked at me for even a second with cheese smiles.  I cracked jokes.  I let the staff sing to me, and i beamed when Jen announced to the whole room that this was my last treatment.  I glided out of that office, feeling Рfor the very first time Рexcited that i am closer to getting my life back.

 

(16-01-29) Chemo Session #3

Halfway done with chemotherapy.

I saw an improvement in my numbers this session, compared to three weeks ago.  For one, i only lost 1.5 pounds this time around, compared to almost 8 the last time.  More importantly, my neutrophils were higher: 1.8, compared to 1.2 before.  I was really stressing out about this.  If my neutrophils go below 1.0, my oncologist will put a pause on my chemotherapy until i can get them back up, and research shows that cancer patients are LESS likely to make it if their treatment gets interrupted.  Apparently, there is a plethora of ways that an oncologist will schedule chemo treatments (different drugs [types and dosages], different numbers of days per week, different ways to administer the drugs, and different lengths of time in between each session); it all just depends on what type and what stage of cancer an individual has.  Since my chemo treatment was based on my individual needs, it’s important for me to stay on schedule … and i was worried that it was going to get interrupted this time, for two reasons: (1) my neutrophils were already flagged as “low” last session, and (2) i got a UTI *and* bronchitis during the last three weeks.  I’ve been trying to buffer against this by taking astragalus, echinacea, and zinc – all supplements to boost immunity – every single day.  In fact, right before i had my blood drawn on Wednesday, i triple dosed on those – and then promptly threw up right outside of LabCorp immediately after leaving the building, while a stranger watched.  Fun times.

Still no word on whether the head honchos at ADJC will let me return to work on February 8.  That’s the current thing i’m stressing about.  People (medical professionals, volunteers at the Cancer Support Community of Arizona, and friends) keep saying things like, “If you can get away with not working during your treatment, don’t work.”  Um, that’s a nice fantasy thought, but my bank account is NOT equipped to allow me to spend the next six months without earning an income.  I could probably get away with working less than 40 hours a week, but ZERO hours?  I might end up being cancer-free, but i’ll be celebrating from a cardboard box out on a street corner somewhere … and then where am i going to store my tequila and four cats???

More updates:

(1) I tried something different with fasting this time around.  I’m trying to see if it’s more beneficial to fast multiple days PRIOR to treatment or multiple days AFTER treatment.  Fasting sucks.  It’s been 46 hours and 38 minutes.  I salivated when i smelled pizza cooking in the kitchen this morning, and i had an irrational urge to slap Jenna upside the head when she started rambling about how she was “starving” because she hadn’t had anything but coffee today.  My goal is to make it to Saturday evening at 6:00.  Last time, i only made it to 56 hours before i went to town on some jello, homemade soup from Amy, and a lactose-free milkshake.

(2) I haven’t hit the worst of the symptoms yet – just tired, lethargic, some achy bones from the shot today, and a LOT of irritability from food deprivation.

(3) I know i had more updates, but all i can think about is food.