BIG SIGH...TWO, Today

Chin up sister, rah rah...sure you can...(I to I)
I've been wanting to write for a while. Like maybe someone will read it and learn and grow or somehow something good will come from going through the process of writing. Where to begin to catch up on what is now fully round 2 of ovarian cancer in my body and life?

Well, after postponing treatment for almost two months so that I could pack and purge and sell, I began experiencing pain. I called the oncology dept and asked for another cancer antigen lab to be ordered and found out that the number was up significantly. Despite doing my best and working as hard as I could to get myself propelled back to CA while shifting my diet radically...cancer grew in me. I no longer recall nor have the energy to cross reference the dates, but sometime not long ago, I learned the CA 125 was up to 168 and I also had pain. I scheduled chemo to begin last Friday, October 24.

The weekend before was spent "busting it out," as I like to say about any time a grand surge of energy is spent accomplishing toward a goal, and a dear cousin flew in from FL to help me to pack and purge and stage. The Friday she arrived, another dear cousin and a dear friend showed up too...and wow, a ton got done! It felt great! There were many other times during the previous two months that tons of work occurred...and also many days spent in the hospital with my elderly mother's health issues. A time of challenge? EXTRAORDINAIRE!

So...lot's of achievement, with rooms staged and a Zillow listing with photos online, then on Thursday, October 23, I wiped blood from vaginal area...and made calls. My surgeon, the true gynecological cancer specialist was the first call. Her office told me they are not my chemo provider and to call the oncologist. They also said if you have a urinary tract infection you will not be starting chemo tomorrow so you need tests to happen and if you can't get your oncologist to do so, call us back. Call two, oncology dept and I tell the telephone respondent of my circumstances. She tells me to come in tomorrow as scheduled for an appt before chemo. I agree, but tell her what the other office conveyed to me and I ask if I will get a call back because I think we need labs. After two hours of hearing nothing, I called my general practitioner, who's nurse social worker has never let me down. I discover, per her voicemail message, that she is gone for the week. So, I leave a message with the familiar-to-me receptionist. I heard back relatively shortly and was ultimately asked to come in and get labs. Mission accomplished. And I got a ride, too. The whole trip with labs took less than an hour. Hooray.

Friday morning I got up and went in for the appt with oncologist. Now, granted, this oncologist is new to me and so far I had decided to not go right into chemo with aggressive ovarian cancer. We do not have the benefit of a relationship, so she likely has an attitude about me and how I make choices. And maybe one day I will write more about putting the treatment off and the dilemmas and difficulties. So damn many. Anyhow, the oncologist saw me, listened and stated the labs came back ok. After the appt and my signing release forms, I walked to the infusion room. Gotta love how that sounds....almost intriguing.

I entered the infusion room and almost immediately heard a voice ask, "Aren't you from Galeville?"
I turned and said,"Yes" and she continued, "You lived on Buckley and I on Ferncliff." Well that got my attention and I looked her in the eyes and WOW! It was my old Ornamental Horticulture high school colleague, Madeline! I had not seen her since 1975. And so it was my first infusion at the VAMC infusion lab had me blessed with the guidance of a chemo nurse with whom I had familiarity. I do so love serendipity and blessings...and realized that I was in the midst of more of those goodies. Cool.

Long, long stories short: the oncologist asked me to undergo another ct scan with contrast to check the growth of the cancer since it had been almost two months since my last scan. I agreed. There was a lot of time spent waiting...for my chemo to be mixed. But during that time, discussion about when to get the scan. It takes drinking a contrast blend and waiting an hour. Madeline and I discussed possibilities and she called the radiology dept. By almost noon, I was hungry and determined to not let myself get weak...I asked if we might be able to get it done before chemo. After calling and arranging this, Madeline left. And my cell phone rang. It was my primary care physician. She just received the lab results for urine and they confirm a bacterial infection. Hmmm, I thought the oncologist told me the labs showed nothing. Well, she did not order labs (nor return the previous day's call) and thus did not take into account the urine lab (which to me seems like it would have been an obvious lab to order given blood in urine). I told my doctor that I was sitting waiting for my chemo to be mixed and she asked to speak to a nurse.

Apparently that provoked a call to the oncologist and a subsequent investigation into what to do. Meanwhile, Madeline arrived with the contrast drink and I gulped it down. She then got an iv in me for the test. One hour later we went to the radiology dept. and got the ct scan done. I went back to the infusion room and learned that my chemo was coming. I inquired about an antibiotic and was told my oncologist called (an) infectious disease center (?) and was told I did not need antibiotics. At that point....I'm putting it into the hands of fate...that's what I think my internal dialogue was saying. Chemo was administered after the pre chemo meds...right into the trusty port. I slept a lot. Good news: the potential rejection of the chemo drugs that sometimes occurs when a person begins a second course of such treatment (Paxiltaxil and Carboplatin) did not occur. Go body go....we have the goods to kill off ovarian cancer in us now...and more sleep. I only woke up to pee a couple of times.

At about 5 pm... and yes it was a particularly peculiar and long day, Madeline got a call and got off the phone to tell me the scan results were available and the oncologist told her to print them for me. No dialogue with the oncologist and I....but once printed, I read the report. All tumors were about double or better in size. And there were many more in the peritoneal area. So much for starving the cancer. It lived and grew. Big fucking sigh. Ok, I guess I am doing the right thing right now...says I to I.

At about 6 pm I was finally ready to exit. Ed, who made a commitment to care for me during chemo recovery, returned to pick me up. We went back to my house and he made me some dinner, which I ate. I also began taking in bags of vaporized medical m. That is my greatly preferred method of staving off nausea. I drank plenty and went to bed and sleep. I decided that I would post and open my garage and basement sale, the sole source of any and all income right now. I stated a 11:30 am opening time on craigslist before heading to bed.

So the next morning, after sleeping in, I got up, had bags, and ate a light breakfast of a smoothie and people began to arrive. I went downstairs to assist and price and before I knew it, it was about 3 pm. I did not hydrate well Saturday and that was a grave error. Ed wanted to run errands and after another friend arrived, he left. I experienced stomach cramps and although I forgot to mention it earlier in this post, being constipated was another strike against me as I began chemo. I did inform the oncologist of that too. We wondered if tumors were causing the problem and that had been another reason to rescan. At any rate, Saturday evening, I felt constipated, but ate two bowls of a delicious fresh pumpkin and unsweetened almond milk soup and some brown rice and stir-fried veggies. We watched the anticipated World Series game with me attempting to relieve my distress throughout the evening.

Sunday morning I awoke feeling lousy. I believe it began during the night Saturday. I was nauseous and felt full up with distress of constipation, to be referred to as "doc" for the rest of the post. I refused breakfast, tried drinking ginger tea, bags, bags, attempt to relieve "doc"...a dizzy spell in the bathroom and I called for Ed. I told him I saw fractal flowers, a precursor to passing out for me historically. He asked me to stand and wash my hands and the next thing I knew, I was laying on the bathroom floor. I called for him. He was off getting his telephone. He got the phone no and called the VA helpline. It was the weekend, so there was no one available in oncology! He got a nurse on a hotline in the Bronx. When he told her I passed out, she suggested he get me to bed. She also suggested Milk of Magnesia. I spoke to her and told her I passed out. There was a language barrier. At any rate, thereafter, I went and laid down and a friend phoned me. I asked her if she could swing over, as she lives about 5 minutes away. She did. Ed went to get the Milk of Magnesia. More discussion about best product of "doc" and another call to the hotline. The second nurse, learning of my passing out, suggested I go to the ER. We discussed that. Meanwhile, I got nauseous. I threw up. Twice. I got nervous. I recall it being drilled into me by my very good chemo nurse last year: do not let yourself begin to throw up. It is a bad road to get on. Damn. A bit later, a different friend came over after texting. She cut up ginger and began giving me hot ginger water. The day dragged on full of discomfort and illness. I was in bed most of the day. I was so ill, I was unable to watch the World Series. That says a lot. I had been enjoying watching the Giants throughout the playoffs and into the Series.

Monday, I awoke still having much "doc". I had taken stool softeners, Milk of Magnesia and nothing was working. Ed took me to the ER. It took hours...lab work, waiting...decisions....waiting...I ended up nauseous and vomited twice. Eventually an enema was given and almost 45 minutes later a bm. Labs revealed my white blood cell count was already off from chemo. I was given an iv of hydration and one of an anti nausea. I went home tired and ill feeling. Wow...never had all this difficulty during last years' rounds of chemo. Damn.

Tuesday went somewhat better. Somewhat. I continued to use bags for nausea and to try to get better hydrated. I recall little...was in bed a lot, up some...felt not good. Then evening came around and time for the World Series. This time I could watch. While watching, Ed got a call. His mother fell and was being ambulanced to the ER. Oh no! So sad and scary. He left to go to the hospital and returned around 4 am. Trooper was really freaking out, banging himself into my closet door. I began experiencing pain in my bladder area. Damn it. I felt really, really bad by the time he got back.

Wednesday morning, Ed called hospital to find they were about to operate on his mom to do a partial hip replacement, despite previous information that it would be much later in the day. That is the last I have seen of Ed. I had called and asked a friend who assured me she would come to my aid to please come in the afternoon and evening, knowing he would be gone. Meanwhile, another dear friend texted from a store and asked if I needed anything. I wanted cranberry juice and told her. She came with my juice, made me a smoothie, beverages, and allowed me to shower knowing someone was here in case. She also took me to pick up the prescription for antibiotics that my general practitioner determined was, in fact, needed. Since that point in time, yesterday afternoon, I have been on my own.The friend who Ed and I had both asked to come support me did not come. Sigh. We all have lives to live.

Today I still felt illish. Not as bad, granted, better. After getting up and feeding the dog, I went back to bed. I had a difficult call and then went into a trance like place while laying down. I let go of all of my problems....I let go and let God. I began to see the autumn foliage slowly falling to the ground and have no idea how long I laid there like that. I finally had the umph to get up and make myself some food and hydrate, but it was already after 1 pm by then. Eventually, I made dinner and feel like I am getting stronger. But is absolutely sucks to be in need. I am used to doing.

The point I am at is one of realizing how vulnerable and how honestly sad it feels to be in need and not have the support necessary. I am trying with all I have to move my life forward. I am broke. That alone is so difficult it is hard to discuss. I know once I sell this home I will have money. Meanwhile, though, there are serious financial pressures on top of all of the others.  For the past two months, instead of any other choices I could have made, I chose to put all my efforts into doing the hard work that I admittedly put off too long toward selling the house and getting out of CNY. I don't want to think it is too little too late. And I believe I am going to pull through this series of chemo into remission again. At that point, I will decide what is next. I envision doing some bucket list things. Traveling...and being around folks who love me...spending time with my four-year-old granddaughter...feeling worth it...being around like-minds and kind, generous souls...going to the big ol trees, the ocean, my special places along the beautiful Northcoast...these are the thoughts that propel me...'cept for when I'm in the doldrums. As I say goodnight to another day, I hope that tomorrow will make me stronger and more independent...able to care for my own needs with greater ease. Amen.

Having recurrent stage IV ovarian cancer is a challenge extraordinaire. The chemo is going far different than the first time. It has been very difficult and it is almost a week since treatment. I had hoped it would be similar to last time; we rely on experiences to gauge what is ahead. I was wrong. It has been far more difficult. I have high hopes that by the time I get the second round, in less than two weeks, I will be doing better in all ways. I hope to find an agency that can provide me some help. I am going to reach out and try to get a social worker to help me to learn of programs. I do not want to feel a burden and hate the feeling of being ditched and want to avoid such feelings. Meanwhile, tomorrow I will go for my first Vitamin C infusion. I truly believe it is going to help my body endure the chemo. I will get infused twice a week. More about other hopefuls to come.