Timeline

I'm changing this up a bit. It's hard to look back and try to put the timeline together, so for now I'm going to start with the most recent and then try to piece together the older stuff from my calendar and the after visit paperwork I get. 

• December 16, 2016. I was supposed to have a procedure done to place a PleurX catheter into my left lung so I could drain the fluid at home. I was still an inpatient at the hospital so a nurse came to tell me how it worked, left an info packet and DVD. I was looking forward to it, actually, because I thought it would give me more energy and less shortness of breath.  But - got down to the CT room where they were going to do this, they took preliminary CT scans to decide where to place the tube - and discovered what the x-ray had shown as fluid was actually a new tumor. Very little fluid in my lung so no need for the procedure. Disappointing - cancer still spreading. Nothing to fix it. 
• December 14-16, 2016. Hospitalized. Went to ER Wednesday evening because I'd been sleeping for 24 hours. Diagnosed with anemia, given 2 units of blood which still left me too low. I asked if I could have another unit. They decided yes. I was still sleeping most of the time. The hospitalist thought it could also be from another left lung pulmonary effusion, from looking at the chest x-ray.
• December 3-6, 2016. Hospitalized. Went into ER because the nausea from the doxorubicin was so bad I hadn't been able to eat or drink for over 2 days. Doctor also concerned about the continued swelling of my legs. 
• December 1, 2016. First day of new chemo, doxorubicin.
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I was diagnosed with cancer July 31, 2015, during a D&C (dilation and curettage) that was just supposed to solve a problem of persistent vaginal bleeding due to fibroids. Instead, the surgeon found I had a sarcoma type of cancer and I was scheduled for surgery on August 4, a total abdominal hysterectomy.  

The problem may have started as far back as December, 2014, but there’s no way to know that.

• Thursday, October 22 - chemo cycle 3B. Halfway through. Port worked fine.
• Thursday, October 15 - chemo cycle 3A. Port still working.
• Wednesday, October 7 - office visit with Dr. T. He wants to see me on the weeks that I don't have chemo, to go over blood work and other stuff. And he told me again how serious my case is, and said again, "I'm going to try to save you, but I don't know if I can." He said if the CT scans are clear after chemo, then we'll do radiation. If the CT scans are not good, and show that the cancer has spread - "Then we just keep you comfortable." So, a death knell. I'd been under the impression that chemo would kill all the bad stuff. I hadn't realized, until then, that chemo might not fix me.
• Friday, October 2 - retroperitoneal ultrasound to check on the soundness of the ureter. Everything looked fine. I was peeing well and the US showed no problems.
• Thursday, October 1 - Chemo cycle 2B, and the port worked beautifully.
• Tuesday, Sept 29 - afternoon, day surgery to replace the port. The surgeon Dr. L said he would put in a different one, a Smart Port, and would make sure the catheter tip was far enough down into the vein. Reading the report later, the tip goes into the atrium of the heart. The report said the previous port's catheter had slipped out of position and was in the internal jugular vein. So that was the problem. This was surgery # 5 in 8 weeks. D&C, major surgery, port placement, stent removal, then port replacement. Rather tired of this.
• Tuesday, Sept 29 - morning office consult with Dr. S, a radiation oncologist. He said he thought my case was good for radiation after the chemo ends. He suggested mid-January, and I can do it at my local hospital. It will be external radiation, not internal.
• Friday, Sept 25 - another clump of hair. Fortunately the wig I'd ordered the American Cancer Society's TLC catalog had arrived on Thursday.
• Thursday, Sept 24 - my hair fell out in a clump. Not all of it, but a huge amount. I'd thought it would just thin out gradually but nope.
• Thursday, Sept 24 - Chemo cycle 2A. And - the port didn't work again. So IV in the arm. I texted my husband, who called Dr. T's office. Decision made to either adjust or remove the port. Means another surgery.
• Wednesday, Sept 23 - went to the local Social Security office to find out about applying for disability, since my condition is on the Compassionate Allowances list. https://www.ssa.gov/compassionateallowances/ Finding out I was on the fast-track to disability was demoralizing. Made me realize my disease is really pretty bad.
• Monday, Sept 21 - day surgery to remove the stent in the left ureter, between kidney and bladder. Yay! I was glad to get that thing out. It rubbed my bladder sometimes and was annoying.
• Wednesday, Sept 16 - office visit with Dr. T.
• Tuesday, Sept 15 - first day back to work.
• Saturday, Sept 12 - Long trip, driving over 4 hours, to a concert, the Foo Fighters. We'd bought the tickets way back in December and I wasn't going to let something like cancer stop me from going. Looking back, it was not a good idea. It was an outside venue and which involved a lot of walking and going up and down hills. I was tired and then in the evening my legs started to hurt, probably from the the Neulasta, which is known to cause bone pain. I sat down during most of the concert, but was able to see it on the large video screens. We'd booked a hotel about an hour away from the venue and we finally got there just before 2 am. Both exhausted. Hard thin mattress which made my hips hurt, but I was glad for it. We wouldn't have made it back home. On Sunday we drove home. I had horrible constipation that evening, so bad I thought about going to the ER. My husband went to the drugstore 2 or 3 times trying to find something to help me. Finally used an enema, which was icky, but forced the blockage out. I nearly blacked  out on the toilet at some point, the pain was so bad.
• Friday, Sept 11 - The Neulasta injector went off on schedule.  It's designed to release the drug 27 hours after being attached to the body. Then over about 45 minutes, the drug flows in, and then it shuts off and I can remove the attachment and put it into my sharps container.
• Thursday, Sept 10 - Chemo cycle 1B. This time the port worked, if I stood in a specific position similar to the Statue of Liberty. Right hand high in the air. So I was able to get both the Gemzar and the Taxotere through the port. They use a special needle, called a Huber needle, to get through the silicon middle part of the port.
  
  After the chemo treatments, a nurse attached the Neulasta on-body injector to my abdomen. 
  https://www.neulasta.com/on-body-injector/ This is a new method of delivering the Neulasta drug. Neulasta is for building up neutrophils, the white blood cells that fight infection. People on chemo are susceptible to infection, so the Neulasta is supposed to help prevent that.
  
  Thursday, Sept 3 - first chemo treatment. Cycle 1A. I was nervous, unsure of what the routine would be. And then - the central port didn't work. They weren't able to draw blood out of it. Tired several positions on me - sitting, standing, lying down, leaning over - nothing. Each time before a chemo treatment, they have to draw blood to see if I'm up to taking chemo. Since the port didn't work, they decided to do the first week through an IV in my arm. The "A" part of the chemo cycle is just one drug, Gemzar, and they felt it was ok to put it into the arm. The chemo oncologist sent me to the hospital for a chest x-ray to see about the port placement.
• Monday, August 31 - dental appt. I'd been told that I should avoid dental work while undergoing chemo, so wanted to get the usual cleaning out of the way. I told them not to scrape my gums - that I needed a gentle cleaning - as I didn't want to have any open sores during the chemo treatment coming up.
• Sunday, August 30 - drove down to a memorial service for a woman who died suddenly at age 39. She had a brain aneurysm. She was a member of a writing group I'd attended for a few years. Reminded me, once again, of the fragility of human life.
• Thursday, August 27 - clinic visit with nurse practitioner J.
• Thursday, August 20 - another office visit with Dr. T. My brother arrived to stay with me for a week while my husband flew across country to visit his elderly father. We'd planned a nice 2-week vacation for August - which obviously didn't happen due to the surgery. I've been driving for  a week or more.
• Tuesday, August 18 - central port was surgically inserted into my chest, near the right clavicle. This will be how chemo drugs are administered, rather than through IV. The drugs can tear up veins and so it's better to go through the port, which connects into the large subclavian vein. The port means no IV sticks each time. This was day surgery. The port was called a Power Port.
• Saturday, August 15 - my first big outing. I went to a cancer fundraiser at a farm about 45 minutes away. Husband drove and a friend accompanied us. I'm not allowed to drive for a few weeks.
• Wednesay, August 12 - first post-surgery office visit to the gynecological oncologist. Dr. T. Checked incision and other things. This is when I first heard the term "undifferentiated endometrial sarcoma." I was told I was at stage IIIB. My husband and I were both on our phones looking at the internet, trying to find out information. Not much info to be found quickly, but what I did find didn't sound good. I was in shock that I could have such a rare disease.
• Monday and Tuesday I used a walker to help me get out of bed and onto / off of the toilet. By Wednesday my abdominal muscles had healed enough that I didn't need the walker anymore.
• Monday morning, August 10 - at 2 am I took my last pain med, oxycodone. I went cold turkey off the pain meds after that. I DO NOT RECOMMEND THIS. It can be dangerous. I work everyday with patients who are hooked on pain meds and just can't do that, so I did the cold turkey route. I knew I'd feel lousy for a bit - and I did - but by Thursday I was fine.
• Sunday, August 9 - went home
• Wednesday, August 5 - woke up in hospital room.
• Tuesday, August 4 - Surgery Day. Hospital called and said we could come in at noon instead of 2 pm for preparation. But then the surgery didn't take place until about 6:30 p.m. after all, so it was just a lot of waiting around. I was in the department called "Short Stay," which is where the nurses take all the blood work and put in IV lines etc. It's a holding pen prior to surgery, and then it's the last stop when the patient is either being discharged, after day surgery, or being wheeled into the inpatient area. The recovery room can be the stop between the operating room and short stay, or a patient can go straight from operating room to short stay if the anesthesia was light and no complications. I'm fuzzy on the details, but I think the surgery took about 3.5 hours.
• Sunday, August 2 - Monday, August 3 - I was scheduled to be at work but I called out sick. No way was I going in. I couldn't trust my body at that point and I and a lot to get done before surgery. One thing I did was to make sure I had my Advance Directive filled out, and then husband took me around to a couple of people to have them sign it as witnesses. An Advance Directive, sometimes called a Living Will, tells the doctors what to do if a life-threatening situation developed and they had to decide to intubate, to do CPR, to do other life support techniques. I don't want to be in a vegetative coma - I don't want to rely on artificial feeding to stay alive - it was really important to me to get the done so I could file it with the hospital when I went into surgery.
• Saturday, August 1 - In the evening I began having severe cramps, enough to make me cry out, and then started passing huge blood clots, the size of golf balls. In between the clots I was bleeding rampantly - going through maxi pads like they were nothing. My husband went to the store to get more. I was in extreme pain - I called the ER where I work to see if they were busy and of course they were - waiting room time was a couple of hours - I decided I'd rather stay home and be in agony than be there. So I just waited it out. Took Vicodin. My husband was so concerned he called Dr. T who said give me more Vicodin. I think I passed 5 or 6 of those clots and then the bleeding eased up some and the pain decreased. Took maybe 3 - 4 hours. I wonder if the D & C had dislodged something?
• Friday, July 31, 2015 - The fateful day. Went into the hospital for a simple D&C outpatient surgery, came out with a diagnosis of cancer. I was told in the recovery room, by the resident, Dr. G, and the surgeon, Dr. T,  told my husband in the waiting room. We were both confused by this turn of events. Not something we had anticipated.
• July 29, 2015 - I was at my job, hanging on via ibuprofen, when at about 4 pm I suddenly just started feeling really bad. Something in my abdomen felt wrong. I told a co-worker I was going to take a short break and headed to the restroom. I sat for a few minutes without any problems, just rested, then went back onto the floor (I work in an ER). But then things got worse. It's a little hazy now, what went wrong, but I know that by 4:30 - 4:45 I was in bad shape. I was hiding out in the back hall, trying to be inconspicuous in my pain, but I guess one of the nurses noticed and said something to someone. And my manager came around and said she'd already called someone in to replace me, that someone had said I was crying, and I was to go home. I couldn't protest - I felt rotten. I was scheduled to work until 11 pm but there's no way I could make it.
• July 16, 2015 - First clinic visit at the gynecological oncologist, Dr. T. They've just moved to this temporary office, since the practice had moved from one hospital system to another, so the space is limited. My husband was with me and we were taken back to a tiny room by the medical assistant, who did the standard height, weight, blood pressure, temperature. Just enough room for a doctor's stool, the gyn bed, a small built-in counter, and a side chair. The doctor who came in said she was a resident, Dr. G. I think she had another doctor-in-training with her. She asked a bunch of questions, then did a simple exam of my abdomen, looking for pain spots and abnormalities. I was very bloated. My upper abdomen was hard, not soft. I'd been gaining weight and my pants had been getting tight, even though I wasn't eating much due to the bloating. Dr. G said she'd do a pelvic exam and my husband didn't want to stay for that so he went out to the waiting room. I reclined on the gyno bed "in the position" but then the doctor couldn't find the right instruments, because of the temporary office situation. I don't know what was missing, maybe the speculum? Anyway, she decided she didn't need to do that since I had a D&C already scheduled for July 31. I went with that, and it was probably a mistake. I should have insisted on the pelvic exam, which might have indicated the cancerous mass that was growing inside. Without that exam, the cancer had another 2 weeks to grow before it was discovered.
• Later, the ibuprofen needed to be bumped up. 800 mg each time, 4 times a day. Maximum safe dosage, apparently. I don’t like narcotics, plus I needed to be able to work, so the ibuprofen had to suffice.
• During this time, sometime around the first part of July, my pain increased dramatically. I began taking ibuprofen several times a day. Usually just 2, 400 mg, but sometimes 600 mg. This would get me through my job.
• July 14, 2015 – Called the gyn oncologist office to make sure they had all the records and ultrasounds from my gyn. They did.
• July 6, 2015 – Called the gyn oncologist office and made an appointment for an office visit. First available appointment was July 16.
• July 4, 2015 – Received call from my gynecologist, Dr. C. This was a Saturday, a holiday afternoon. When I saw her name pop up on my caller ID, I knew it wasn’t good news. She said because of the rapid fibroid growth (“doubled”, which I thought she meant the one had doubled in size but later saw on the pathology report that a second one had popped up too) at my age, she was referring me to a gynecological oncologist, Dr. T,  because a small, remote chance of cancer. She said I needed a hysterectomy but she didn’t want to do it, because of that very very very small chance of cancer. In hindsight, this was a good move on her part. She referred me to a local guy she really likes, who does surgery as well.
• July 2, 2015 – Third transvaginal ultrasound. This is first suspicion of problem, apparently. “Fibroid has increased in size significantly since February and now measures 7.3 x 7.0 x 7.0 cm. Second adjacent fibroid measuring 7.3 x 5.9 x 7.0 cm .” Endometrial max is now at 14mm, out of normal range. Left ovary couldn’t be seen, “thought to be obscured by the large fibroid.”
• February 27, 2015 – Second transvaginal ultrasound. Slight size increase in “subserosal leiomyoma on the posterior wall of the uterine body.” Endometrial thickness 3mm is within normal limits. Left ovarian cyst is gone.
• December 16, 2014 – Generalized pelvic pain. PCP Dr. B ordered transvaginal ultrasound, which revealed a fibroid “in the lower uterine myometrium) with dimensions 3.9 x 3.7 x 3.2 cm and a left ovarian cyst of 2 cm. PCP not worried, said she’ll order another ultrasound for a couple of months later.