Home today

 So I’m headed home today. Not sure I’m ready but I’m going.  I have some stuff to assemble and some volunteers to do it and I plan on cooking Thanksgiving dinner later this week.  Lots of gardening to do too.stay tuned. I’m so ready to be home! 

Total confusion

 Two weeks ago I got the news that my tumors had grown 30%.  I was in the hospital so it was easy to ad in a CT guided biopsy of the tumor near the left kidney.   

Whoops.  

The biopsy shows no cancer in the cells taken.   It is possible it’s good news (tumor fragmenting and dying) or it could be something else.  We will rescan in two months. In the mean time I m not letting myself think it’s gone.   Please no overtly positive comments.  I think my oncologist is as confused as I am.   

Back to nausea

Yesterday and today I got sick (nauseous and vomiting) during PT.  It was quickly over but limited our work from standing to just sitting up.  Then I was visited by the social worker ans head of PT telling me mmy discharge date was firm for Friday since I wasn’t making progress.  The week at the hospital really set me back.  After we talked about my issues with backsliding (edema makiNg legs heavy in addition to the hospital) they extended that two weeks.  But that will be the drop dead date. I can leave earlier but not later.  I’m going to try takNg zofran (a whopping 4 mg) before PT tomorrow.  At the hospital I got 40 mg but here only 4 mg.  It still seems to take the edge off.  

PT is beating my ass

 Belinda - maybe 5 feet tall and ultra petite - has been exhausting me with PT.  We are working on standing and holding it. I still get anxious, maybe it’s the altitude.  Lol.  She’s great, quite the cheer leader.  I still/again need a lot of assistance with standing but we are working on that.  

Boring beats exciting I think this is mostly due to the swelling. So I sit here with my legs wrapped and elevated and hope that the edema goes down.

 Still lots of swelling in the legs so they are hard to pick up and move. That makes PT difficult.Otherwise same old same old especially over the weekends when not much happens here.  That beats the excitement of last week.

I have not yet recovered from the hospital stay as far as mobility.  I think this is mostly due to the swelling. So I sit here with my legs wrapped and elevated and hope that the edema goes down.

Welp never again

 I had my first and last nebulizer treatment with albuterol last night. Five minutes after it was done I had most of the bad side effects. 

First came the discomfort in my chest and then dinner reappeared. The level of anxiety was huge. My heart rate jumped and  I was vomiting and hmy hand trembly   Heart rate nearly 140 when my normal is 90-110. 

I had the option to go to the hospital ofc.  The nurse consulted the doctor constantly - this at midnight - and we brought the heart rate down with meds.  The nurse stayed with me until symptoms eased. I am liking the 100 heart rate this morning. 

More drugs

 Slight shallowness of breath so I will get some meds including allergy for that. 

Lots of swelling in my legs making it hard to list my legs AGAIN so Lasix to try to reduce it. 

Thanks to all who have reached out to me!

Rehab again

 Let’s see.  Sick to my stomach again but made it to rehab on Bryan Rd south of 83.  Flu going around. 

http://maps.apple.com/?q=Mission+Nursing+and+Rehabilitation+Center&ll=26.19425392150879%2c-98.31153106689453&sll=26.19425392150879%2c-98.31153106689453&ppois=26.19425392150879_-98.31153106689453_Mission+Nursing+and+Rehabilitation+Center

Part 2

After a couple years of Stability my cancer exploded more than 30% since the last scan in early July. I am still hospitalized (4 months and a week?) so they did a biopsy to test for potential success for immunotherapy.  Mixed feelings as I have been wanting the test. 

Low blood sugar when I have to fast for tests (no shocker there).  

Hope to be back in rehab soon

Love to

You

All 

Biopsy #3

 They squeezed me in for biopsy number three today. I hate waiting. Next they will do testing on the biopsy samples to see if I have the potential for immunotherapy to give good results. I have been wanting the immunotherapy testing so that’s a positive thing.

Shit shat ist geshotten

 I used to conjugate Crap in German like this. 

I learned today that there was significant growth on my tumor. I haven’t even gotten out of the hospital yet. Working on scheduling a CT guided biopsy to look for other treatment options (immunotherapy). Stay tuned. I’m licking my wounds.  

Lawdy lawdy

They still can’t get blood. the blood from this morning was taken down stream from the hydration drip and was therefore They think showing high anemia when I’m not showing any symptoms. 

Results of the endoscopy were good   

A doctor finally came to talk to me about the CT results - some fluid collection in various places- any why procedures were scheduled for today.  rather than have a needle aspirate liquid an equally good option is waiting guess what I chose.

Horribly bad day

 After much trepidation I agreed to undergo a endoscopy.  They think they found the source of the bleeding and fixed it. We will see if it worked or not. First time under general anesthesia (propofol) and hopefully the last   Still can’t moon walk even with one glove  

They are still failing on blood draws.. Not sure why they send the B team first. I have bruises on bruises and still have 3 IVs. 

Slept like a log all afternoon.  Not sure it made up for last night yet.  No idea when I shift back to Mission rehab.  

Yikes they ate back for another blood draw. 

Back to the hospital

 Let’s see

Uti

Maybe lung Cloudiness /pneumonia 

Anemic / transfusion

More including blood where it isn’t supposed to be

Fifteen minutes sleep last night  

CT at 3 am 

Another CT at 43o

GI Doc has me on NPO (nothing by mouth) but I don’t know why  

Again

 So I spent Friday pm and the weekend throwing up.  Chest x Ray Friday and another today - Drs can’t share. Stool sample sent off and UTI back or never gone.  Blood work done. First phlebotomist failed five times.  She is not welcome back. Second got it first time. I’m feeling low and don’t expect to get home this Friday.  Yuck. . 

Monday blues

 Really good PT session where I was at 80-90 for power to stand.  That was the highlight.  Lunch came at 1 pm (usually 1130) and was a hot dog which I ate. One ketchup packet and zero salt for the fries was limiting.  Half an hour later the hot dog reappeared. It was prob ELG the most meat id eaten in weeks. 

Even keel

 Early last week they missed my 4 AM thyroid med.  I felt better.  So I declined the Med the next few days and lo and behold woke up clearer headed on Saturday.  I was able to eat and avoided nausea. Now to talk to the Dr about what to do for the thyroid.  New labs tomorrow. 

Long silence

 Sorry for the long silence. I haven’t had much to say beyond whether I had nausea or not each day. Today’s a good day so far no nausea we will PT up hoping I would tolerate it better and I did.

Blood sugars been pretty constant even though I’m having difficulty eating. I try to eat something each meal or stretch a meal into two meals but it’s a struggle.

Great to see Sheryl Barker today especially bearing gifts of watermelon and Diet Coke and grapes. I hate to say there’s a good thing there’s a hurricane for entertainment but it beats the daytime television. More soon I hope.

Mission Rehab initial thoughts

 Mission Rehab wins hands down on food s far. Seeing a calendar with two weeks of meals and being able to choose among options is great. It’s also good to not receive food that will be wasted. Today was cold cereal breakfast because they had almond milk(!), jambalaya for lunch, and pulled chicken BBQ for dinner  

The true test of any facility is how they handle issues. There’s always going to be issues but how do they respond. Five stars to Mission rehab on this. 

Both facilities have every other day shower assistance. 

The window faces brush instead of parking lot but we will see how the bird list goes. 

Staff at both places in nursing CNA housekeeping and PT are great!!! 

Arbor View to Mission Rehab

 Ok I’m at Mission Rehab now much closer to home.  Cost for room and board is half that of Arbor Ville. Of course I asked for A single room for the cost of half a double. And they bit which is fantastic. I’m hoping for better food which certainly was the case tonight I had a nice salad and some non-cream tomato soup and fresh fruit which wonderful mix of watermelon and melons and pineapple and stuff room is huge since it’s really half a double the TV has shrunk to maybe the size of a computer monitor and the number of channels is 10 or so.I don’t care I’m not here for the TV. I have to meet the rest of the staff tomorrow since they got me in here after seven tonight. I was supposed to come yesterday but that’s a whole other saga 

Saturday Sept 10

 So Monday is the last day covered by insurance. I made the decision to go to Mission nursing facility which is closer to home.  Of course my records were not passed over on Friday so now I have to deal with that on Monday

In the meanwhile let’s see, Dr. S has taken me off the tablets for insulin to see if that’s why I was getting nauseous at PT, taken me off and put me back on and taking me off a renVela (which I blame for nausea)  done an extra blood test for which I have a massive bruise thank you very much.   phlebotomist could get blood -  and found a UTI that only took a week after the urine test to get labs back.   

So back on antibiotics I go 

Arbor View Redux

 So let’s see. They’re kicking my ass and PT and OT. I do an hour and a half or more a day and sometimes get homework. Everything aches lol. The food is monotonous. I have actually been served the same exact meal two days in a row twice now. Once it was chicken salad and coleslaw and the other time it was tuna salad and coleslaw and believe me I’m just sick of it lol.  We are trying to get the swelling out of my right leg they did Venogram to be sure it wasn’t a blood clot and then now we’re wrapping it. Can’t use a diuretic with the kidneys.  

Up to ten species of window birds (naked eye without glasses).  

Windsor Arbor view

 It’s a lot harder to post to the blog on my phone then on the tablet and there’s no signal for the tablet.  Windsor Arbor View has been wonderful. came in Thursday night I had an evaluation for PT on Friday and have done PT yesterday and today (Monday and Tuesday).  Five species out the window so far and not including squirrel just birds. I’ll try to write more later

Adventures in healthcare 956

So today’s peer to peer meeting between my doctors and the insurance company evidently went well. I was approved for transfer to a skilled nursing facility. Yay!  

After initial serious problems with the food at the hospital which generally consisted of a slab of proteins that was stone cold, something that I would be suspicious about having dairy in it, and a frozen vegetable I went on a vegan diet at the recommendation of my kidney doctors. This has become a salad diet it seems lol. They bring so much food I get a huge salad with avocado and veggies I get a soupAnd a fruit cocktail. In theory I can get fresh fruit but that’s only happened once. Right now the food is generally excellent and of course being Edinburg there is pico de gallo and salsa Verde. yes the sores in my mouth Have healed

i usually take whatever soup they bring whether it’s meat or vegan And drink some broth and maybe some veg. Today’s soup was onion and cabbage. I so wanted to do a Dickensian request for more but i couldn’t finish the first helping.  

Transfer today or tomorrow.  Or whenever the paperwork is done.  

Two steps!I was able to stand with help and take two steps with my bad leg to get into the new recliner. The old recliner was quite short and the thighs and in the back the new one is larger more my dimensions and much more comfortable I hope especially as I’m sitting here two hours. I already feel it in my car though lol

 Two steps! I was able to stand with help and take two steps with my bad leg to get into the new recliner. The old recliner was quite short and the thighs and in the back the new one is larger more my dimensions and much more comfortable I hope especially as I’m sitting here two hours. I already feel it in my car though lol

Hotel California

https://youtu.be/5x8SlA_A7Cg

So the hospital has been pushing me to go to Arborville a local rehab facility every time they talked about discharging me. it was all their idea. Arborville denied me access under insurance because their rehab is too intense for my level of fitness at this point. But it was never my idea it was the hospitals idea. My doctor is challenging the insurance denying coverage for rehab hopefully it will just be at a lowerLevel of rehab intensity. That’s happening on Thursday. So here I sit.

Amazing changes over the weekendDiabetes. In that case I may be on the road to the rehab fairly quickly. And good news on strong kidneys though I will probably be under watch with them for years

So this morning Monday morning my kidney doctor tells me that he wants to see how my blood work is in the morning tomorrow potentially remove the port that they just installed an end dialysis. The underlying problem may be Diabetes. In that case I may be on the road to the rehab fairly quickly. And good news on strong kidneys though I will probably be under watch with them for years

Lazy weekendAnother transfusion last Friday but I’m feeling pretty good.

Let’s see. Only one blindsided medical test this weekend. I went with it though I still wonder what we’re doing. No dialysis so I’ll start that again tomorrow.  Another transfusion last Friday but I’m feeling pretty good.

Riding on the MTA

 There’s a certain similarity at DHR with is riding on the MTA. Patients are often consulted on what procedures are going to be done and doctors can be clueless. I spent 16 hours today waiting for a minor procedure not allowed to eat. This is on an eight hour fast mind you.  

My day started with my doctor telling me they took my right hand port out yesterday I peeled back my jumpsuit and said and so was this and there was the port. Two different medical professionals told me they were inserting a port today. I spent half an hour talking to Jesse at patient advocacy about being a Bandan in the chair yesterday and about the time it takes to getAny help to get out of the chair. I was falling asleep pushing forward and unsafe in the chair and I could not get any help to get out. That’s a whole different story.

At 1 o’clock I was told it was being moved up in line. That never happened I was one of the last procedures to be done. They did come to take me to dialysis about 1 o’clock and I refuse to go on an empty stomach. Nothing like sitting for two hours on dialysis having had no food for 13 hours.

The most ridiculous thing was the 16 hour fast that I undertook for an eight hour fast. They wake you up here at 2 o’clock for blood draws 2:00 AM mind you. So I was up from 2 AM to 8 AM but not allowed to eat because I wasn’t allowed anything after midnight. I did not go in for the procedure until almost 4 o’clock. When I returned I had clear vegetable broth stew zucchini and the usual Cereal and crap. I’ve been unable to get soda I’ve been unable to get juice.

My recommendation to anyone coming to DHR radiology is to confirm that by 9 AM if they have not been taken in yet they will be eating and they will have to delay the procedure another day. I spent what four days of the last nine not eating because I’m waiting for procedures to avoid for cancel up to 15 hours after I started fasting.

I think the only person that didn’t lie to me today who is Edward and who brought me back up from the procedure and he had no role of the whole thing everybody else was telling me stories saying how sorry they were and yet not fixing a goddamn thing.

MTA lyric Kingston Trio

Welcome from the home with the worlds worst coffee

So yesterday I asked if I could go to the chair by the window and was told that without pt.  Good thing I’m still weaker than I seem For this morning maybe because I was agitating they put me in another chair for two hours.

Dialysis later today and again Wednesday

Food much better today. I asked for vegan - good for kidneys - and the food was edible. And more.  

I spent five hours in the chair this am 

Yesterday a lost cause with nausea aagain sleeping today. Love.

Likely another week in the hospital.  Decisions decisions.  Stay tuned.  

Hmmmm

 So let’s see. Still no biopsy results. No CT results from yesterday not surprising. Creatinine still high. Feeling good.  

Note I have an overall Dr kidneyDr internal medicine and more…

Update CT shows a bruise that may be the final-explanation 

Note —- missed posting this.  Paperwork done for transfer to Arborville but no idea when it will happen.  

Quit blaming the kidneys

Well it was a quick CT scan late tonight looking for blood as always. The question is why am I anemic.  The kidneys seem to be slow working but off the hook that’s excellent news. No dialysis just slow for now.

Punt pass and kick

 So the latest is that they’re going to check with my oncology/hematology department. They are not sure why my hemoglobin is still bouncing around.  They are pulling my oncologist into it.  Stay tuned.  

Biopsy FINALLY

 So monday I got the biopsy about 230 pm.  Dr just checked all is good tues.  T,hey will keep me here until they get results.  

Another transfusion. Good morning here’s your consent …. 

Don’t panic

 I am ok. Lots of nausea the past several days.  Kidneys an issue.   Lousiest BD EVER.   

15 hours fasting and counting

 Dr. B the kidney doctor said about noon for the CTtoday.  Nothing by mouth after midnight.  Why more than 8 hrs? No idea.   Can’t get the CNA to do her job and can’t get to the CT and woman am I pissed.   251 now. No communication.  Had the RN call and they put me at 5 pm last again but didn’t tell a soul on my team.  And. Now.  402. Pm. Cancelled to Monday 

Oh Duck

 So I got good news this morning but I was gonna get the biopsy as the last patient of the day because they have to scrub the room after. But unlike other CTs this one they want you not to eat for eight hours which of course they didn’t tell me until lunch didn’t come at 1 o’clock and I had just finished breakfast . But they told me that I was supposed to eat for eight hours before the minor procedure. And they walk in here at 3:15 and canceled the test.  

Cold coffee and early Drs

 I told Ken it would take me about three days to finish this coffee it’s wonderful to have coffee with flavor even if it’s not hot  

So already a visit from the kidney doctor 6:30 in the morning kidney numbers are not improving kidneys are functioning but protein levels creatinine are high. We are going to - get this watch and wait a day or two - and see what happens. Dr B is awesome  

I see clouds out the window.  

Can’t believe voice to text got  creatinine right!

Solid food

 Something Very strange happened today. I felt this emptiness in the pit of my belly. It’s been six or seven weeks since I have been hungry.  I actually ate some macaroni. I had a little a couple days ago but this was like most of the serving and I’m still working on it.  Yay.  

One more day on IV antibiotics for the urine infection.  

Waiting on a transfusion for anemia.  

A new antibiotic today 

Watching Fulmar on deadliest catch 

KW is my hero!  Thanks for the coffee

Another sleepless night

Please remember there is nothing more inconvenient than you calling me   Expect a hang up   

Thanks My sleep schedule is whacko.

The crisis today was they said they couldn’t take blood through the port anymore.   Didn’t take long this morning to convince otherwise but then they came for blood cultures.  Eventually won that but for awhile we were going to the mattresses.   The Dr must have seen rising white count again.   They can have all the blood they want from the port.   Sticks?. Tell me why 

Sugar sugar

 So the nurse came in because my blood sugar has been bouncing from 130 to much higher than that. She was gonna start me on insulin and decided for some reason to do it later.  Next sugar is even worse.  I’ve got the PA chasing her down.  Of course at that moment they came to take me to a CT.  Yikes.  

 my LVN nurse was doing blood sticks on me several times a day even though they were not asked for requested or required. When my blood sugar spiked the only reason we knew was because of her. Thank you!

Now it’s only half what the panic level was.   Life is good.   Kidneys next.  

A couple more days a couple more days

 Lol

They’re transfusing me again after a new type/cross   Hemoglobin at 6.2 

Waiting on radiology report on kidneys the current concern.  Long discussions w Kidney Dr he dropped something about next, week for the move   Yikes  

And always the vampire rechecking blood 

I love my port 

Top to bottom

 Ulcers in my mouth

Candida in my throat 

Chest and o2, ok

Kidneys ultrasounded but they did not see much because of the tumors. 

UTI

Arthritis in hip / weak right leg

No feeling in feet

Weakness

Another infection they are looking for

Low hemoglobin 

What did I forget?

Jeffrey Rocks

 Jeffrey has been my nurse today.  He successfully replaced inedible meals for me twice.  He’s always present or a page away.  PT was good trying to get stronger.  

New meds seem innocuous.  Hair seems to be falling out again.  Large dead patch but I can’t clear it out.  

Reminder - Please DO NOT call.  Positive airflow COVID room is LOUD.  

The Hampton

Ram came today 3am  and said he was taking me to a new room. I asked where and he said at the Hampton. Kind of wasn’t kidding. I have a TV for the first time and it’s about a 35 incher. infusion has about 20 inches. But the trade-off is I have to wear a heart monitor 24 seven. So I have to say the main rooms at DHR are much much nicer. Nurses still absent after an initial flurry     

New dr new tests including looking into my sore throat and painful hip/ lower back.  Also he listened to my food issues.   Yay.  

Two more days ….

Lookin for wascally wabbits

 So it turns out I still haveIncreasing infection And wbc  blood count so I’m in the hospital to tomorrow pm now 

Still waiting for insurance approval

Eviction

 Friday night Mike was back on the job and did a bunch of stuff for me before I realized I was not his charge.  Later he did trade for me and as a result last night was comfortable as hospital stays go   

Sat AM my Dr says Im stable, time to go home.  I can’t sit up due to back pain, can’t stand, and still haven’t eaten much.  Finally they got me soft and bland food at lunch.  The butternut purée was good, the greens were ok, and the chicken ground up at least edible.  I’m way off protein.  The one other thing I really liked was sweet potatoes a couple days ago.  

They found me a rehab (no no no lol) near home but it’s been 4 hours and here I sit.   

Amen for Mike

 So my call button wasn’t working after six tries I called the emergency room. Mike appeared care of everything including the freaking alarm that has been going off for an hour and a half. He also knew that they are going to admit me so stay tuned. He gave me his phone number!   I like Mike.  

Although admitted I never got a room outside the ER.   Why do they keep the rooms sub freezing?   Brrrr 

On the 8th they had disabled calling the ER… 

Update

 Well my kidney or bladder infection got 3x antibiotics they said it was nasty.   I got moved to a COVID room but not kicked out.  Still no interest in food.  Not much to say.  

New life events

 So add COVID positive test to the list.   Super low hemoglobin so transfusions. 

Fucking constant bP test   Hate it   

After eight hours I got some jello and pudding cups.   My blood sugar was crashing.   

And a bladder infection.  

And low blood pressure.

At least they are not sending me home tonight.  

A gallon of blood

 So we (PR and I) tried to head out to DHRs Er today.  I was able to get to the front door but had to give up.  Eventually I had EH call an ambulance.   

So for family who asked my o2 stats are at 100%

I saw a Dr at intake then got to an ER room. After sitting unseen for hours the Dr made it and yikes so many tests.  A gallon of blood it seemed, X-ray,  COVID test Yoda yada.   

Transfusions in my future.  A bolus of liquid for dehydration.  Who knows what else.  

No visiting reminder

 Hi 

Just a reminder mostly to Family.  Do not turn up on my doorstep.  You not be admitted.   I can’t entertain you.  Go to a nearby hotel and GO HOME.  Ty

Tweety Bird

So my Drs PA who I call tweety bird called to be sure I had the meds that insurance had declined initially. I take double the authorized dose and that’s a lot.  13k a month.   She says she never saw a message about my being sick and said anything over 100.4 I should go to the ER.   And yes my Dr is on vacation this week.  Argh.  100.4 is what I call afternoon… 

They were supposed to come and replace my door lock today but the person didn’t show up for work.  They trying to find someone else to do it.  I can’t walk the back way out of the property it’s too long a hike so I’m stuck.  The ever helpful receptionist / organizer said maybe she could come do it.  We will see.  

Meanwhile PR came over so I wouldn’t be alone with the handyman and has been going great guns on dozens of things that have been annoying me.  I was able to eat half a milk shake and a part of an egg roll so solid food yay.   

Still here still ghosted

 I’ve left messages for my Dr with no reply.  Temp still all over the place but fever not as bad if I don’t fall asleep under the heating pad.   

Thanks to EH for carving out my front lawn and trimming.  

And thanks TK and PR for food and other support.  

I have no interest in food.  I was eating some broccoli cheese soup - forcing myself - and ended up with massive runs.  When you don’t eat many solids you don’t have to go often so it was a surprise.   I’m wondering if my gluten / milk allergy is returning.  

And on top of this I get to try and get my door fixed.  Gee thanks.  

Anyway not dead yet.  

Thirteen minutes

 Wednesday close to 11 Pm I got a call from another Dr in the practice. My blood work was off.  They would try to get me in on Thursday for a transfusion.  Thursday I got 4 spam calls in Spanish about my cars extended warranty.  I changed a spam setting. I then missed two calls from the infusion dept and returned the calls 13 minutes later.  The tech said no guarantees but if I could get type / cross match they might be able to get me in that day (Friday).  So huge thanks to PR for taking me and being the squeaky wheel to get an appointment that afternoon. 

Perfect storm. My phone works fine plugged in but dies without electric.  PR is unfortunately Android.   Couldn’t borrow a charger, doesn’t really matter as I sleep through IVs.  When the tech that called in the morning and couldn’t get me he called my emergency contact.  My brothers conferred and decided a wellness check was needed.  They had the sheriff break into my house.   THIRTEEN MINUTEs.  

I am pissed, I feel violated, I hope this is the end of it but I wonder.  

So the hope is that I will feel better starting tonight and it will last two weeks.   Fingers crossed.  

Go Away

 So I went on a 48 hour pelagic on the MV Fling June 1-3.  I love pelagics but neglected to see that all the cabins were lower deck.  I did something to my hip - reinjuring an old ache that’s been interfering with sleep and walking.  Having to do multiple steep stairways really made me sore   

I definitely caught something from the crowded conditions on the boat.  I made it home and went through a mild cold for a few days.  Then came the wild fluctuations in body temperature aches and shivers.   

There were phone calls that woke me up and phone calls that left me puking for half an hour after.  I have turned my phone off.  I’ve stopped work for now.

So now I still can’t feel my feet which sucks with balance.   I get overheated walking a short distance and puke.  

I talk a little and puke. So mostly my phone is off.  

High Anxiety and Much Ado about nothing …

1/27

So let’s see.  Early December I had to put my mare Dreamer down. It was the hardest thing I had to do in this life but it was also the kindest.  I blew up my car (well not really but I thought it was dead).  And then about ten days ago I was eating a sandwich and broke a tooth. Four dentist appointments and a crown later I think I’m done with that stuff for now.  

For five months I’ve been trying to get the results of genetic testing for immunotherapy. Today while getting my port flush I pushed for information and lo and behold the results were in!  Can I see the Dr next week?  Hell no. But I can see him TOMORROW.  Once again I was told it has to be in person so I will be having a cow if the Dr tells me otherwise.  

I still need to buy a new car, I still need to lose some anxiety that crept up on me today, and I need to stop losing weight.  

1/28 

So yesterday the PA told me I had to see the Doctor in person so I went back to the hospital oncology clinic today.  Fortunately he was pretty much on time and home to home was only 3 hours.  

I was hoping for GOOD news on the test since I had to go in in person, because all I came up with for bad news was we keep doing what we are doing.  Good news we would need to talk about changes, bad news no changes to talk about.  I was wrong.  Mostly the report said they had insufficient material to test.  So no news, the worst option of all.  We will go ahead with the next CT and see how things are going, so no more news for 6 weeks-ish.  

Pain and Loss

This happened about 8 weeks ago. I was too upset to share it. 

I had someone at the recent festival tell me I was lucky to be alive after four years fighting cancer.   Really.  I had a visceral reaction about the four years of pain, terror, nausea, physical limitations, pain, and did I say pain?  I’m not so sure.  I’m not doing this damned treatment to live another month with these issues.  I’m doing the treatment in the (slim) hope to get to the other side, to a life without pain, without nausea, where I can walk and do the things I like to do.  It’s a fantasy, but it’s my fantasy.  

The people that care for my horses recently found my girl in pain with an abscess, and the pain wasn’t relieved when the abscess started draining.  The vet came out and we found that her old age disease was limiting her immune system and that her old founder issues meant that she was in constant pain.  The abscess was the least of her worries.  I had the choice to make, try to save her or put her down.   

Trying to save her was the heart speaking.  She would be in constant pain for a year at least.  Sooner or later the same issues that led to Secretariat being put down would likely necessitate her euthanasia as well.  It would be a life of pain and restrictions and treatments.  And she’s a diva or drama queen when it comes to pain.   The other choice was that I could put her down.  I couldn’t do it that day, mentally I had to process the news.  But I decided to put her down and three days later we did.  

In the intervening three days she was on pain killers and increasingly mobile, but that was like fools gold, there was no improvement. We could actually see the injury getting worse day by day.  It was the right thing for her.  I couldn’t have explained to her why the pain was necessary and what I hoped for in her future.  She wouldn’t understand my hopes for her future.  What I really wanted for her was a life without pain, and there was only one path.  

Good bye Dreamer, I will never forget you.