Rochelle, Rochelle

Literally, I am crawling towards spring break.

If I am not sick with a fever after school, or vomiting from being on chemo for almost two years… or breaking anything and then spending time in the ER…. then I am in bed and keeping my legs up in the air, once I make it up my stairs.

I say all that, (but there’s more), because I am really doing everything I can to work.

Quick story: After today’s visit to the lab for bloodwork…twice, and my doctor’s visit to find out what’s happening with my kidneys and liver (kidney specialist tomorrow), I had to go to the local pharmacy and pick up my new script for a possible staph/mrsa infection.

Initially, I was treated for cellulitis … even though my orthopedist wasn’t convinced. I am on antibiotics because I am prone to anything and don’t heal.

I was instructed to take the pills with food- fine, no problem.

So, hubby takes me across the street to pick up a salad; a place where you use a touchscreen to choose your ingredients (big mistake).

Finally at work, it’s still lunchtime so I have my salad- the first meal thus far. Immediately my mouth becomes inflamed and I realize there are jalapeños laden throughout!

Meanwhile, I had taken my medicine as soon as I began my salad, but because it was causing hot flashes, I threw it out.

Several minutes later, my class arrives and I begin the lesson. All is going well… now that another adult has entered to observe, and I begin to walk around to see what is what.

BOOM! I tripped on a backpack and could not stop myself from completely going down (how I broke my toes)

To no avail, the adult who tried to help me up did not know I am nerve paralyzed on my left leg between my hip and my knee, and would never have gotten up unless he and another, came from behind.

After scooching a foot back until I could reach a desk, I was finally (and barely) able to stand.

Unfortunately for everyone, all that work to get up, took all my air out of my lungs.

Somewhere between trying to catch my breath and sitting, I realized I did not eat enough.

Knowing there was no time to make it to the bathroom, I got into my office and walked towards the sink to get a wet paper towel. Quickly, I went to the trashcan and…

Sparing the rest, washed my face and mouth and returned to class.

So when I say, “I am literally crawling towards spring break….”

Today I had to return me gallon of pish to the hospital and then get bloodwork.

Naturally I could not just drop it off to the lab- no, I had to register for outpatient business and wait.

When I completed registration, I went to the lab with my dog in hand.

The nurse who has been drawing my blood for three years now, every three weeks, asked my name and DOB. Fine. I get I’m forgettable…

Meanwhile, after “hmmph” and “psshhh” ‘ing, she told me that there were no orders for any kidney testing.

Nurse: There are no orders in the system.

Me: That’s impossible; I was given this can which automatically comes with the order for blood.

Nurse: It’s not in our system; you’re welcome to go contact your doctor in the lobby so I can call in another patient.

Me: I have to get to work; can I just give you this (holding up the bag with the gift)

Nurse: No ma’am; I’m afraid you’ll either have to take that and either get a script or you’ll have to do the entire test again.

Just when I thought I couldn’t lose anymore dignity…I had to urinate in an orange jug for 24 hours.

Ew. Disgusting. Vomit.

Now, the woman at the lab who tossed the jug towards me on Thursday, did not give me any directive other than to read the label on the jug. The only thing she did ask me was if I needed one or two.

Unfortunately, I underestimated my output and simply replied, “one will do”.

There is no way to be inconspicuous with a bright colored orange jug. There is no “excuse me, I must use the restroom” and then grabbing my tank of sis. Therefore, I would begin my journey on Sunday A.M. and into Monday, (the specimen had to get back to the lab for testing ASAP).

When I began the test, I read and reread the directions so as to not eff it up. There was no sissy cup anywhere. Was I supposed to go in a paper cup and pour it in? Or…

Needless to say, I had to stand and make every time. There was no fitting this Milk-Gallonish looking jar in the toilet; I had to stand like an animal and pray I’d make it.

Rochelle, Rochelle, why pray?

*I am wearing compression hose to ward off any edemic, goutish looking swelling and I cannot pull them down very easily… which means there is no fitting the jug with my knees bound together like some prisoner.

As the day grew, the jug became heavier and heavier. Also, I became more and more blaze about schlepping it with me throughout the house.

Meanwhile, I’m working on Bar Mitzvah things- trying to feel less like a leper, when my son walks in.

Me: Hi! Want to see what I’m working on?

Son: Nah.

Me: (holding up a pair of pants) Could you put these over there for me?

Son: (walks towards desk) Why do you have a gas can in here?

Me: (realizing he saw it and just make a face)

Son: (looks at my face and back at the gas can) You’re disgusting! Daaaaaaddd!

Hubby: (screaming from the other room) Eww! What’s wrong with you?!

Kid #2: (screaming from upstairs) Why are you all screaming?! Is mom carrying her jug?

Kid #1 (screaming from bathroom) You’re so gross!

I returned to work this week.

On the one hand, it feels as if I’ve never left, despite not really doing anything. My new boss was gracious enough to have me overlap for a full week… but as kind as that was, I don’t see the need. I’ve had this job for 23 years and if you know me, I work best in the pilot seat.

However on the other hand, I am also a few degrees shy of an ER visit every three weeks. In fact, today since I could not wear my compression socks, by 10:40 am my legs were tight and swollen. Normally, I could be on my legs until 4:30, 5:00 pm… but that is with sufficient leg elevation.

And while I enjoy the mental distraction… I also feel as if there is sound proof glass between me and my colleagues. Like, not one person knows how sick I am nor how quickly my health can disappear. You see, I look good despite not being able to walk and mentally, I can run the ship… but the physical toll and the barrage of My Chart test results and upcoming tests, is all consuming, overwhelming… and fucking frightening.

No, I don’t want to take another six weeks off, nor do I want help doing my job.

…I suppose I would take the kindness of having a seat on the main level of any work function… so that I won’t get edema…again.

Well, well, well… it has been a long time since I’ve updated you on my shitstorm I call my body.

To begin, I was sick for a good two weeks and couldn’t walk more than a few feet before having to sit down and catch my breath. Since nobody could figure out why… I called my new cardiologist who I’ve no doubt, regrets ever taking me as a patient.

He wanted me to wear a 24 hour heart monitor and have an echocardiogram; both tests were completed and still, no reason for my stroke level blood pressure, or high kidney levels. He even went further to say that he could not be my “go to” person for anything heart related since my issue is from the chemo.

Additionally, the doctor at Sloan believes it could be from one of my chemo drugs, so I am now going another 3 weeks without it since today’s blood pressure resulted in it being too dangerous for them to administer…

In the meantime, I am off of the blood pressure medicine that was IMO causing me to have negative energy and feeling better, despite all of my doctors feeling it could not have been the blood pressure medicine. …Yeeeetttt, since stopping them…. and since I am back to my new normal…. I’d say they’re incorrect.

In any event, while hubby was away and I had to let out our three asshole dogs, I fell down the last stair. Although I was holding the railing and hubby felt I would have been able to not fall if that were so,…. I simply could not make my leg stop buckling and could not hold my body upright. Sadly, I have two broken toes as a result.

The telling news is that I figured out that the reason I do not have any strength in my left leg, is because the damage is at the hip and not the knee, as previously thought.

While I cannot lift my left leg more than 3 inches from the knee….it is also coming or only coming from the hip.

Shockingly so… my radiologist finally admitted he thinks it may have happened last year on my first stereotactic radiation.

Ha ha, no shit… I’d been saying its from the radiation, but he felt the chances were less than 1%….

To which I replied, I AM THE LESS THAN 1%.

….Sooooo, dancing at my son’s bar mitzvah is 100% out… as is bike riding on a normal bike… and walking fast!

As if things couldn’t get any fucking worse, I happened to check My Chart for an appointment date and managed to see a new message from my too fucking thorough internist.

Let’s just say, that infection that nobody could figure out… may be the start of renal failure according to the trip through Google I had to take after copying and pasting this underlying “possible” disease I saw written from doctor to doctor.

Tomorrow, I will hear from Dr. Doom on her upcoming test she wants me to take to “confirm” said disease.

We arrived at the hospital after a two and a half hour ride, just in time for our scheduled appointment. Unfortunately, since the doctor only sees patients on Tuesdays, he was three hours late.

During that time, my sister went to pick up a sandwich for me, while hubby kept roaming the hallways. My mother made phone calls and I think, tried to nap. As for me, once I figured out how to lift the leg part of the chair, was fine.

After my sister returned, two doctors came in to review my case. He wanted to discuss what he saw based upon my scans and then told me his opinion regarding the trial.

Once again, I do not show measurable growth (good news) but there were options. According to him, I may be able to get onto the trial, but medically speaking its best to say the course.

When I asked him if came off of chemo, would I be able to get back on it if the drug didn’t work, the answer was this:

Dr, #1: When you started with the chemo, you started with three drugs and you would have to do that again. That is very hard on the body and while you could do it, it may not be effective anymore.

(*to save us time, he felt that once I stop chemo, I couldn’t go back on it since it won’t work like it is now.)

Those two doctors left us in the room to discuss, and the consensus was that I would continue with chemo until it stops working, and then do the trial.

But then… the head of the trial doctor came in and basically said something completely different. He felt I had many options, one could be to lower the dose of chemo causing these side effects, lower my blood pressure medicine that has taken my energy, and see how that goes. I could do that for a few more rounds and then do the trial or just continue on that path.

…Or, I could go on the trial and since that isn’t a guarantee, I could always go back to chemo.

Say whaa?

He felt that I could stop and start chemo without restarting the entire drug set and that would be no problem.

Now, who do you trust? Each doctor gave a very different opinion and this was a very big decision.

Naturally I will trust the lead doctor and head of the trial… but only after the chemo stops working.

Today hubby and I went to Home Depot to return my broken detachable shower head. Since we’d ordered from BJs via Instacart but had a problem, I told him we should just go get the rest of the items that never arrived.

Now, hubby is wearing a boot since he broke his foot. …Remember when I had to go to the ER two times ago and hubby got out of the car 3 miles from our home just to avoid sitting there again? Well he was walking home and not watching where he was walking- which is wonderful for a blind man (he has RP) and he broke his foot.

Anyway, we walk into the entry and each grab a scooter to get the few things we needed.

Say whhhaa?

You read it! I, Miss Germaphobe, got onto a non-sanitized, public shopping vehicle… touched the handles and got my shit, not thinking of anything other than: I cannot walk.

Who are you?!

Mortified; that’s who I am. Absolutely disgusted with myself! You bet your bottom dollar that I came home, tossed my clothes into the washer and showered, once the realization of my actions registered.

I am off to MSK to meet with the head doctor in charge of all trials’ lung! That is correct, that trapeze swing analogy I wrote about a few months ago… well, I think I am ready to jump drugs.

If I am a candidate (I am) and the DIC (doctor in charge) (made it up) agrees that I should switch treatment plans, then I would come off of all of my medication and take one pill.

It sounds wonderful to go back to taking a one and done! No more having to get chemo every three weeks! I could (timing sucks) travel and not be tied to side effects or treatment. My blood pressure would come down and I would have my energy back.

Yes it would involve travel to the BA, but if I could get some of my life back…

Of course, there are a few other things that unfortunately could come back with all that… but I hear people are doing great on this drug.

Anywho,

(I AM NOT DEPRESSED! I am on too much medication to be unhappy! …And for the record, my fishes are gone!

My team of doctors all agree one should stay the course on a treatment that is working, unless the side effects become too much.

(I am “one”).

The thing is, how does someone know if it is too much? Or, how can a person honestly know if its too much, or just too much for them?

I’ve asked myself this question for a long time because since January, chemo has become like a psychotic friend. For the most part it’s been great, not unpleasant… just a routine. Somewhere between December and February however, it’s become more intense.

I could go a few days okay and then be sick for a few days… or I could not be sick at all. Recently, I was sick for two weeks after treatment, then had chemo, and got sick again for a week. In addition to the vomiting and/or diarrhea/constipation, I’ve had stroke level readings on my three times a day blood pressure cuff.

Now on even more medication, I take the highest dose milligram for blood pressure and a water pill… which would be great if I could muster the energy to limp to the bathroom with my dead left leg to urinate anything since I have no care to drink.

Today, I got up to walk to the bathroom and had to sit down at my sink and catch my breath. Getting dressed is exhausting. Putting on compression socks is like my Iron Man competition and it took me 6 minutes just for my good leg.

I am fine if I am sitting… but if my legs aren’t soon elevated, then they begin to build and retain fluid- where it feels like rigor mortis. It’s getting up, as of late (or since the new bp medicine) where I am out of breath instantly and I cannot talk and…

Physically speaking, I feel like while I could go a few more rounds…others would have stopped long ago.

So…