Thursday, February 2, 2023

I'm Still Here on the Planet... Catching Up, 2/2/2023.

The previous post can be found HERE.

Catching Up

Two years ago today I got the news that I had metastatic urothelial cancer, found in the retroperitoneal lymph nodes of my pelvis and abdomen. I was told that my cancer was called "bladder cancer" and if caught early, it can be cured, but my cancer was not caught early.

I didn't know it at the time, but the oncologist I had was fucking lousy at communicating what the truth was. I asked her what stage my cancer was. She hedged, telling me, "...between stage three and four." She never outright explained or specifically said to me that metastatic urothelial carcinoma, bladder cancer,  that had spread to my lymph nodes, was terminal cancer. Even though I worked with hospice patients, I did not know that.

She also was lousy with getting my temporary state disability started. It took her over six weeks to get one of her nurse practitioners to fill out the paperwork, and even then they forked-up information on it and I had to correct it before submitting it myself.

At the time, my employer really, really liked me, and my department head gave me a gift. They would put me on a company "general leave of absence" for six months, even though I had not been with the company for a year. This was huge. That would keep me on the company books and also continue benefits that I had signed up for, I just had to pay for them fully.  To get that company leave, all the oncologist had to do was fill out the paperwork that I would be evaluated in six months to return to work. That's all she had to do for me, and she even fucked that up.  She didn't complete the paperwork by the company deadline so they initially denied it. I then had to appeal while she got her act together to finish the paperwork.

When I went into the office to pick up the paperwork to meet the new deadline, I received the pages back and started reading them. She wrote to my company that I was "Stage IV cancer. Patient is terminal." I was in shock. Tears started running down my face in that tiny waiting room. That's how I learned that my cancer was terminal. That was in May 2021.  

My friend went with me for my next appointment with her, and I pointed out to her the cover letter she ignored and the mistake she made. She was very embarrassed and apologized a lot. She said she would write whatever I needed. I did get my company benefits extended for six months, but it was like pulling teeth. I started telling my friends and family that Quasimodo would be a better oncologist than this woman. There were several other embarrassing mistakes she made, but what I mentioned here were the most egregious. I knew I had to try to find another oncologist, someone more on the cutting edge. Adding to my discomfort was the tiny cramped treatment room with patients so close together. I was also really put off by the unprofessional behavior of the treatment room nurse who hooked up my IV treatments. I was more professional treating hospice patients that this IV nurse.

Searching For A New Oncologist

I told the oncologist and my family physician that I wanted a second opinion from a specialist at a hospital like UCLA. My insurance finally approved that. I had to get my entire medical file copied and transferred to the doctor I saw because I knew it would takes months for this oncology office to get that together. I have to say, that I felt more warmth and a caring attitude from that urologist-oncologist specialist at UCLA than any doctor I had ever met in my life. The last thing he said to me was, "We're going to take care of you." I thought I had finally found a doctor with their eye on the ball in treating me.

But it was not to be. My Medicare Advantage plan approved the consultation but since his treatment plan was the same as what I was receiving now, the insurance would not approve transferring my case to an out-of-network doctor, for treatment that could be provided at a lower cost, in network. There was no getting around that.

I went back to my family doctor to get me a referral to another oncologist within my network, someone younger, who knew how to use a laptop to take notes. A doctor who knew which patient room she was walking into. My family doctor told me about a woman oncologist she met and she really thought I would be a good fit with this new doctor. She was right. The professionalism of this new oncology office and the old one was like night and day. I was so grateful to be with a more professionally run oncology network.

As a side note, where I left off 19 months ago, I did crack my patella with that fall in the Target parking garage. I had to wear a removable leg brace for about five weeks but it healed in about 6-7 weeks.

10 Rounds of Chemo
In 2021, I went through a total of 10 rounds of chemo. My new oncology office also was a big believer in supporting the patient, first, find out how to pay for it later. They got me DNA testing that the prior oncologist told me, " won't pay for that."  And they had better tools for supporting the patient. When my hemoglobin dropped low, they got me approved for injections of Procrit. Procrit helps bring up your red blood cells and hemoglobin.

At the old oncologist office, I had four rounds of Cisplatin and Gemcitabine. Cisplatin is a very toxic chemo drug and my kidneys took a bit hit. My one good kidney and my atrophied left kidney were not filtering out the toxins in my blood and tissues very well. This is one of the known side effects of Cisplatin. (Even today, my kidney function is still outside the normal range.) For my fifth round, I just had Gemcitabine. By the time I was with my new oncologist I was switched to a less toxic, and less ideal chemo drug called Carboplatin with Gemcitabine. However, Carboplatin is not the ideal drug for my cancer.

My 10th and last round of chemo was on December 21, 2021. A week after that, my hemoglobin crashed and I had to have a blood transfusion in the ER. The chemo was keeping my cancer at bay. It did shrink some of the lymph nodes, but it did not get rid of it all together.

First time Finding Cancer Cells in my Bladder

In June of 2021, for the first time ever, my urologist found cancer cells in my bladder through a special bladder wash called a "FISH wash." A follow-up cystoscopy in early December, he found a small spot, maybe an inch at most across that he thought might be cancer. He said it needed to be biopsied and cauterized. At the time, he also said to me, "Why don't you get the surgery to remove your bladder, they build a new bladder our of your small intestines also take out the lymph nodes." This was the first time he suggested this to me and I didn't know that was even possible. I told him, get me the referral. I had the biopsy on the bladder spot and the cauterization in late January, 2022. The biopsy came back positive for cancer.

A New Companion

I had been wanting to get a new kitty for a long time. My last kitties died in late 2016 and with my ex going through a heart bypass, there was just too much going on. Then my ex started to go downhill mentally, the house became an episode of extreme hoarding and I couldn't see bringing an animal into that situation. Then the decision to divorce, try to find a new place to live and heal. I had to go to to school, get a job and try to get settled into a life. Then my cancer diagnosis happens. After I went on disability, I thought about it often but the US was in the middle of a pandemic. Rescue organizations were requiring ridiculous questionnaires to be filled out, requiring video of your home space before they would even consider you. I finally signed up for this notification service, that let me know when new kitties became available at rescues, as well as LA City and County shelters. Jun 28, a new kitty popped up as being available.

From his one photo, I thought he might turn out to be a real handsome guy. I called about him. He would be available July 1st. I made an appointment to see him July 1 where he was located, an LA City shelter down past Torrance, CA. That was a long drive for me, well over an hour. I brought my carrier, kitten food, toys and water. I got there and I learn they don't let you into the facility. Someone brings the cat out in a carrier, and you don't get to see him close up, but from the other side of a steel fencing. I barely had a look at him. I didn't get to hold him, just see him in a carrier through this steel grating. I took a chance and said yes. They thought he was 3 or 4 months old. He had been dropped off at the shelter on June 29. They had no history on him. He had his surgery to be fixed June 30th and now I was adopting this handsome, medium hair tri-colored kitty on a hunch.

He cried most of the way home, but it was clear he had been around other kitties and human socialized. He was not feral or wild. I eventually named him Butter Biscuit. First photo of the Butter Biscuit is when I brought him home and second photo, he is almost 2 years old. He's been a wonderful companion on this journey. 

Treatment in 2022
My body had maxed out on chemo. My new oncologist felt it was time to try a different drug, immunotherapy, one of the new check-point inhibitor drugs. These drugs are quite expensive -twelve to fourteen thousand an infusion- and I could never afford the co-pay. Luckily, Keytruda had a patient assistance program that accepted as payment what my Medicare Advantage Plan would pay. I started on Keytruda in late January. (From the chemo, I have permanent chemo induced anemia. I have plenty of iron in my body, yet my bone marrow can't access it to produce more red blood cells. I have permanent, decreased kidney function, that my oncologist says is my new normal. I have permanent neuropathy in my feet.)

In March 2022 I had my first consult with the urologist surgeon. This was now my urologist. They thought my case was unique and that I might be a candidate for surgery.  They wanted to see me in another three months. At first, it appeared the Keytruda was working. I had a check-up scan in June that showed some of the lymph nodes as stable and others shrinking. 

September Scan - Not Great News
My next scan was September 9. The scan showed that the smaller lymph nodes were stable, but two of the larger, "target" lymph nodes appeared to have grown a couple millimeters. The urologist-surgeon suggested getting a new biopsy. I didn't see how they were going to get a biopsy of the lymph nodes that were right beside my descending aorta in my abdomen. He said he would submit it to the tumor board for an opinion. The other news was, the scan discovered a small blood clot in my inferior vena cava. That is the large vein that descends the heart and goes down through your abdomen to your legs and beyond, bringing the blood back to the heart. My oncologist said I now had to go on a blood thinner. For this type of blood clot, it's location so close to the heart, they treat this with drugs. People who get blood clots in their legs, they can use a sort of rotor-rooter technique to unblock the veins in the legs. You cannot do that with a blood clot in the thick vein so close to the heart. I was on a blood thinner I had to take twice a day. And my oncologist said I needed to be monitored more often so I was to get my next scan in two months.

My next scan happened November 29, 2022, a little later than I'd hoped. I got the report a week later, even before I saw my oncologist. The blood clot in my inferior vena cava had grown. The blood thinner had not helped. The bigger bad news was, several of the lymph nodes had grown significantly, one lymph node had grown almost two centimeters, others over a centimeter. When I saw my oncologist December 7th she said that cancer, by its very nature is a coagulating disease, so my disease was progressing. I would have to go on a stronger blood thinner. My choices were either Lovenox or Coumadin. The dosage on Coumadin is hard to get right in some people, so it requires a blood draw weekly. Lovenox is an injection that I would be taught to give myself once a day. I chose the Lovenox, to avoid a weekly blood draw.

My oncologist also mentioned to me, that it would be good to have another biopsy of one of the growing lymph nodes that the urologist-surgeon submitted. My insurance approved the procedure, but it could not be done at USC. It had to be done at a hospital in network.

My oncologist said the Keytruda was no longer keeping the lymph nodes from growing. I needed to go on a new drug. My options were Padcev or to go back on chemo. I did not make a decision that day. Padcev is very toxic. My hair could finally fall out, more neuropathy in my body and I could become hyperglycemic, high blood sugar. My oncologist said the chemo did keep the lymph nodes from growing. The reason we stopped was your body couldn't take any more of it at that time. My oncologist said the Keytruda appears to be keeping your cancer from spreading to other organs. This type of cancer can quickly change, and break out to other organs very fast. So I got another dose of Keytruda that day. 

Another Health Issue Surfaces
The next day, December 8, I started to get what felt like a sinus infection. I took a naturopathic remedy that helped a lot. I saw the urologist surgeon on Tuesday, December 13. I updated the surgeon with the difficulties getting the biopsy scheduled. Looking at my scans, and the enlarged lymph nodes, the surgeon said this took the possibility of surgery off the table, for now. The surgeon also told me that he recommends that I go on the Padcev first, before going back to chemo. He still wanted to see me in about three months, just to see how I was doing, before releasing me back to a regular urologist.

The next day, Wednesday, I woke up in terrible pain in my chest and back. I thought I had slept wrong. And I was coughing. Even taking one and a half tablets of Tramadol didn't touch the pain. The following day, I was still in the same amount of pain. I was able to get a teleconference with my family doctor's office on Thursday. They arranged a COVID test and wanted me to get a chest x-ray. The COVID test came back negative. The chest x-ray I was able to get on Friday, but not in time for my family doctor to review the report. I had to wait until Monday, December 19.

The x-ray report said I had congestion in the middle lobe of my right lung. I was diagnosed with pneumonia. Little did I know then how much the pneumonia would delay everything.

I got started on two different antibiotics that day. One I would take for five days, the other for seven days. The pain in my chest though, didn't immediately disappear. It moved around to different parts of my chest. I couldn't lie flat in bed or on my side. My sofa became my bed for a long time. And my coughing was non-stop. And that amount of coughing is physically demanding, it's like heavy exercise.  I saw my family doctor December 23. She listened to my chest, my heart, did a bunch of other tests and said my lungs sounded fine. My heart was fine. And my pain in inhalation was still there, but not as bad. It would just take time to clear my lungs.  I was supposed to see my oncologist December 30, but I woke up that day in extreme pain again. My right side ribs hurt every time I moved and my low back was on fire right below my floating rib on the right side. I cancelled my oncology appointment. No way I could go. 

I got another teleconference with my family doctor's office. Another x-ray was ordered to rule out new infection. However, the x-ray report came back with mixed messages. This time it said I had infection in the lower right lobe, but the overall report said there was no change between the two x-rays. They wanted to put me on more antibiotics immediately. I had to press the tele-doctor to speak to the radiologist to clarify what he meant.  Fortunately, the tele-doctor did speak to the radiologist that evening and got back to me. The x-rays were the same, however, both x-rays showed I had pneumonia in the lower lobes of both lungs. So much for the consistency in report documentation.

After a few days, I was able to figure out what was causing the pain in my back and right side. I was coughing so much and so hard that I sprained the intercostal muscles that span from rib to rib as well as the quadratus lumborum muscle in my low back. My body pain was musculature from strained muscles. It was not because of infection. I saw my family doctor again January 4th, She listened to my lungs again, listened to my heart, checked me for swelling in my legs. All was good. She again told me that it might take a "long time" for my lungs to clear.

 Two Years Later, Where I am Today: Hopeful
Today, my energy level is not what it used to be. I'm still coughing a lot, but at least my body has adjusted. I don't have pain coughing, it's just physically exhausting. The pneumonia set me back worse than chemotherapy ever did. I'm still waiting for approval for the new drug, Padcev. I'm still trying to get that new biopsy scheduled. 

The good news is, I can still manage to take care of myself. I don't need help showering or getting dressed. I can go shopping, just not for long periods. I can do a small amount of gardening and fix my meals. So that's the positive two years later. And I'm hopeful about this new drug. There have been some people with my type of cancer, Stage IV bladder cancer, who went into remission on Padcev and are still in remission almost 2 years later. So I'm hopeful for that.  And, once my lungs clear, (I'm hopeful that will be soon) there is a second degree murder case that will be tried at a courthouse relatively close to my home, not downtown Los Angeles. It would be very easy for me to get to this courthouse and possibly cover the case. Oh how I would love to be in court and cover a trial again! But my lungs have to heal. I cannot be in a court room coughing during a hearing or trial. The the judge would throw me out.

The case is not a national level case, but it has been covered locally. A very tragic case for all involved.  The accused is a socialite, Rebecca Grossman. You can read about it HERE. But most of all, I'm so happy to finally have a companion again.


Ronni said...

So good to see you back writing again. What a nightmare journey!

Sending the best thoughts for recovery...