For those of you who do not already know, I am an ovarian cancer fighter/survivor! My previous medical updates were posted on MySpace, and on my Lion King forum. However, I realized how unfair this was…only people who want to join those sites can access it! I am sorry for this.
This entry will consist of a timeline, listing all the events. Going forward, I will try to post things as they happen.
Follow up:
Background pre-cancer medical info: asthma (approx. 25 years), allergies (approx. 25 years), migraines (12 years), Chronic Fatigue Syndrome – CFS (3 years)
Post cancer additional medical problems: Pre-Diabetes, CFS induced dizzy spells are worse
Sunday, September 21, 2008 – Brian and I were watching a movie and suddenly, around 10:00 PM, I started feeling sharp pains on my lower left side of my abdomen. Brian drove me to the ER. While he waited in the waiting room with the kids until 1:00 AM, wondering what the heck was going on (they weren’t too informative) they performed an ultrasound (internal…ouch and yuck) and lots of bloodwork (the stupid nurse made two failed attempts at an IV before giving it to another nurse.) The ER doctor informed me I had an ovarian cyst that showed up on the ultrasound. He said I needed to follow up with my OB/GYN on Monday ASAP. If my OB/GYN would not see me THAT DAY, I should see my regular doctor. If I started getting dizzy, nauseous, or started vomiting, though, I should return to the ER. They sent me home with Percocet and horribly bruised arms from the botched IV attempts.
Monday, September 22, 2008 – My husband called the OB/GYN. They refused to see me because they don’t see patients on Mondays. But I was told I could see her on Tuesday if I called back the next day… Since I was told to follow up Monday, I opted to call my regular doc instead. I got an appointment for the afternoon. Before I could go, however, I started getting dizzy and vomiting (the warning signs the hospital told me to come back for.) My mom had been on her way there to help out, and drove me back to the ER…. More bloodwork (and yet another failed IV attempt…what is wrong with these people?), and a CT Scan went down (*groans* had to drink the dye, as well as get injected with it….horrible!). I went around 2:00 PM and left at 10:00 PM, being told again to see my OB/GYN the NEXT day.
Wednesday, September 23, 2008 – Tuesday, my husband called the OB/GYN again to schedule the appointment….now they refuse to see me until OCTOBER 23RD! They’re “booked solid”, and won’t even make an exception for an emergency. Annoyed, I called my insurance to have a new OB/GYN selected. I called the new doctor, who was absolutely horrified to find out the old doc wanted me to wait over a month to be seen for an emergency case. They managed to get all my test results in less than 20 minutes, and found out the hospital recommended an MRI because the cyst was “suspicious”. Between the wait time for insurance approval, the earliest available MRI opening was on Friday. They scheduled my doctor appointment for the following Monday, as there was no point in seeing me until after the required MRI. They checked on me daily to find out if I was okay.
In the meantime, my mother had moved in with us, to take care of me, and the kids. Thank goodness, because the cyst is affecting everything. The dizzy spells wouldn’t stop, I had to lie down all day. I couldn’t sit up as it was too painful. I was typing this lying down with a laptop. I even had to eat lying down, or I threw up my food! This was horrible, the pain was horrible.
Friday, September 25, 2008 – I went for the MRI…more injected dye….I feft like a pincushion! I had to wait until the following Monday to get the results from my new doctor.
Monday, September 29, 2008 – I went to the doctor. The cyst was pretty bad, and does need surgery ASAP. However, now it’s being called a “mass” and I needed to get sent for cancer screening bloodwork. This will take a week to come back, and they can’t perform surgery until then. Another appointment was scheduled for Monday (October 6th), and will then discuss the next steps. At this point, almost certain surgery, possibly just the mass, but more likely the whole ovary. I got upgraded from Percocet to Vicadin. Immediately after, I went for the bloodwork…more needles…
Monday, October 6, 2008 – I went back to the doctor. My bloodwork came at the “high end of normal”. (The doctor said that the levels were too high to be totally ruled out as cancerous, but it was still highly unlikely.) Surgery will be scheduled soon. During surgery, they will test a piece…and decide while I’m on the operating table whether to just remove the cyst or the whole ovary. This should happen in a week or so. Then I’m looking at another 6-8 weeks out of work afterwards for recovery. Unfortunately, they are having a problem getting an assistant surgeon. They will call me on Tuesday with a surgery date.
Tuesday, October 7, 2008 – The doctor’s office called today, Tuesday, to let me know my surgery will be on Friday the 17th.
Side notes: Kenzie was having eye problems, and her vision was deteriorating and her lazy eye is worse! The old specialist can no longer help her and passed her off to a new doctor. She was scheduled to be going on Monday (the 13th.) Hopefully this doctor CAN help her! Also, I was scheduled to get my crown put on, finally, on Wednesday (the 15th.) Bad timing all this, as it will be torture sitting in that waiting room and in the chair in my present condition. *sigh*
Friday, October 10, 2008 – I had to go through bloodwork the week before surgery at Warren Hospital. (Where it took four different blood lab techs multiple tries to get a vein…) Does anyone there have a clue?!
Friday, October 17, 2008 – SURGERY DAY! I had to stay an extra day in the hospital…Originally it was overnight, I did not get out until Sunday. I will not even get into the nightmare hospital stay. (Brian is actually writing a complaint letter, and my doctor was screaming at the staff.) Anyhow, my doctor performed what started as a cyst removal Friday. Unfortunately, the cyst overtook my uterus, and they had to remove the uterus, too. They tested the “cyst” and found it was cancerous. From here on in they are referring to it officially as a tumor, instead. The blood test results were testing for the most common type of Ovarian Cancer, and apparently not the rare type we now know I had. I was scheduled to follow up with my doctor Wednesday, and will then be passed on to a cancer specialist. Depending on what the final tests on the tumor reveal will tell me my next steps. My doctor seems to think at the very least a hysterectomy, with possibly chemo and/or radiation. (My doctor could not do the hysterectomy himself, as his assistant felt that they might miss the lymph nodes…best to leave it to a cancer specialist.) Nothing is around here, though, so I knew I would have to travel at least an hour away.
Wednesday, October 22, 2008 – I went to my OB/GYN for a follow-up. My incision area was a bit red, so I had been scheduled to go back in a week for another check. My doctor referred me to the Women’s Cancer Center at Morristown Hospital. Unfortunately, after reviewing my paperwork, they decided to have my doctor refer me elsewhere. They have no openings for at last a month, and they said my case was too urgent. I was given over to the Cancer Institute of New Jersey, which is the best in the state and the only affiliated with the National Cancer Institute!
Wednesday, October 29, 2008 – I had my first visit at the Cancer Institute. They still need to review my actual pathology slides, but based on the report alone I will have to proceed with surgery. They are looking to get me into Robert Wood Johnson next week. This surgery will be much more involved than the last. (Where they removed only an ovary.) This will be a combination complete hysterectomy, as well as a “staging” surgery. I will be having the uterus and cervix removed, the remaining ovary and fallopian tube removed, they will remove the fatty tissue from my pelvic area, the protective padding for the intestines will be removed, and they will also be checking/removing the lymph nodes. As an added precaution, she also said the appendix will also be examined and possibly removed. This surgery will involve at least 4 days in the hospital, and she said I probably will not be up out of bed for at least 4-6 weeks. (With the last, I was up and walking after 10 days.) My doctor said there was only a 10% chance the findings will show me at Stage 1. She is very baffled, as I am only 30, and this type of Ovarian Cancer generally only hits women over 55. I also have no family history of women cancers (breast, cervical, ovarian, etc.) If I fall into this slim margin, the surgery will be all I need. If I am in the other 90% range, I will need either chemo, radiation, or both.
Friday, October 31, 2008 – I went to Robert Wood Johnson for the pre-admission process. (Bloodwork, chest x-ray, paperwork, etc.) They got me on the first stick for the bloodwork, but they acknowledged it was very hard to get the vein.
Tuesday, November 4, 2008 – SURGERY DAY, part 2. (On a civic note, even though it was an hour drive to the hospital, and I had to be there by 8:00 AM, I STILL MANAGED TO VOTE beforehand!) As mentioned before, I had a complete hysterectomy (uterus, cervix, remaining ovary and fallopian tube), the fatty tissue is the pelvic area was removed, the omentum (lining to the intestines) was removed, and the lymph nodes were removed. The cancer was staged at 1C…which is very good survival-wise. However, the “c” means that the cancer penetrated the tumor. This, unfortunately, meant that I would have to suffer through chemo.
Tuesday, November 11, 2008 – After a looong week, I was finally released from the hospital.
Friday, November 14, 2008 – I made the hike back to the Cancer Institute to get my staples removed by my onc nurse.
Monday, November 17, 2008 – I started my first round of chemo, less than a week after being released from the hospital. These were to be spaced 3 weeks apart, 6 total rounds. The first went pretty good, but they put the IV in a bad spot, and it was irritating the vein. It then took four nurses to be able to successfully find a better vein. At that point, they decided to have a port surgically installed. This was scheduled to happen before the next round of chemo.
Tuesday, November 18, 2008 – The next day, I was thinking that this wasn’t so bad. I went out shopping for food and other errands. No sickness…until that night. Luckily the doctor was making me take anti-nausea pills, so it wasn’t too bad.
Wednesday, November 19, 2008 – By the evening, I got the dreaded fever I had been warned to watch out for. Chemo patients have to call if the fever goes anything over 100.5 …. mine was 101.5. I called the Cancer Institute, and they wanted me to go to the ER…since Robert Wood Johnson is an hour away, and Warren Hospital is pretty bad, Brian drove me to Hunterdon Medical Center instead. After an x-ray and a CT scan (more dye) they discovered fluid behind my healing surgical area. It seemed the chemo was keeping me from healing properly. During the stay in the ER, the area ruptured, and started draining.
Monday, November 24, 2008 – I followed up with my oncologist, and was informed that because of the chemo I was going to take a lot longer than expected to heal. Plus, more bad news: the CT Scan also showed that darn cyst on my kidney. For those of you who don’t know about this, while I was pregnant with Kenzie, they found this fairly large cyst on my kidney during an ultrasound. After she was born, they followed up (because MRIs and CT scans are not safe during pregnancy), and referred me to a urologist. The urologist monitored it for about 3 years, and said that it had not grown (at the time it was the size of a goose egg) and it was benign anyhow. He said there was no point in damaging the kidney by removing a harmless growth. Well, fast forward to now. Since the “cyst” on my ovary was supposed to have benign, but wasn’t, they can’t take the chance that this might not really be a cyst. An appointment with a urological oncologist was in the process of being set up for me.
Thursday, December 4, 2008 – I had the MRI for the cyst. You guessed it, more dye. By this point I had so many holes poked in me…. This is also the day my hair started coming out…in clumps!
Friday, December 5, 2008 – I had to go in for surgery to have the port implanted in my chest. Would you believe they made me be awake for this? This was to give nurses direct access at all times to a vein.
Monday, December 8, 2008 – My second round of chemo (using my new port!) No complications at the Cancer Institute, everything went smoothly. Actually, that whole week, other than the normal sickness, everything went pretty good. Nausea subsided by the following Monday.
Tuesday, December 9, 2008 – I got fed up with the hair loss and shaved my head. I had ordered head coverings the previous Thursday and had my doctor put in for pre-approval for a wig, so for now just a bandana. (Thank goodness I kept those from the Breast Cancer walks I do each year!) However, the bombshell was dropped on me this day that the doctor can’t get the pre-authorization for the wig, the insurance is jamming things up. The receptionist pointed me instead to a salon in town, whose owner has links to the American Cancer Society. They got me a wig for free! All I had to do is bring in a lock of my hair (from what I had just shaved off) and a picture of me when I still had hair.
Wednesday, December 17, 2008 – The nausea came back along with, you guessed it, another fever (101.7) When I called the nurses at the Cancer Institute, this time my doctor was pretty insistent in me bypassing local hospitals and trying to get to Robert Wood Johnson. Once there, they discovered my while blood cells dropped dangerously low and I was neutropenic. They kept me in the ER for awhile, in an isolation room (to prevent contamination.) Then, later that evening, I was admitted up to the cancer ward I spent all my time post surgery in.
Thursday, December 18, 2008 – One of the doctors from my practice checked me out, and informed me I would probably go home on Friday.
Friday, December 19, 2008 – Another one of the doctors decided my levels were still way too low, and I would not get out before Sunday! I had to suffer daily injections of Neupogen to boost my count, as well as being on “lock-down” because of risk of infection (no fresh flowers or fruit to my room, and sick people have to wear masks.)
Sunday, December 21, 2008 – The levels were still not high enough. They would not let me leave.
Monday, December 22, 2008 – My levels had not moved much, and I was afraid I’d never get out in time for Christmas! However, the doctor took pity on me and let me go home, after giving me a final injection. One last parting gift? My incisional area from the surgery was not healing properly. He cut me open in two places to help the skin have to heal all over. For future rounds of chemo, it would be followed 24 hours later with a Neulasta shot to prevent this from happening again.
Monday, December 29, 2008 – Round 3 of chemo!
Friday, December 30, 2008 – ….and a Neulasta injection.
Wednesday, January 7, 2009 – I finally got to see the urological oncologist. According to the MRI back in December, the growth is actually on my adrenal gland, not my kidney. Since it is now much bigger, they will have to surgically remove it. This needs to be planned for March, after chemo is done, or I willhave trouble healing. (Looks like my return to work will be delayed even further.) In the meantime, I am being sent out for another lab test, to check for cancer markers. The doctor says that most cysts are not cancerous, but also points out that I must have already learned the hard way that some are, due to my ovary. I’m also instructed to bring my MRI films with me when I come in to chemo so he can see them himself rather than relying on a report.
Tuesday, January 20, 2009 – Round 4 of chemo. Well, my doctor was first, as usual, and I was suffering side/back pain. So they sent me to radiology first for some x-rays.
Wednesday, January 21, 2009 – Neulasta!
Friday, January 23, 2009 – The pain has not subsided. Again, I was told to head for the Robert Wood Johnson ER. I was admitted for testing. Unfortunately, the cancer ward was full, and they stuck me on the kidney/dialysis ward (8 Tower), as it was also a sterile environment.
Friday, January 25, 2009 – I am released after a nice little hospital stay. They determined the pain was muscular but ended up keeping me for other issues that were cancer related but unrelated to the pain I was originally admitted for.
Wednesday, February 11, 2009 – Round 5 of chemo!
Thursday, February 12, 2009 – Neulasta!
Wednesday, March 4, 2009 – I came down with the flu just before chemo day. Plus my white blood cells were actually too high this time! As a precaution, chemo was delayed. This just HAD to happen on my last one, didn’t it?
Monday, March 9, 2009 – Last round (6) of chemo!
Tuesday, March 10, 2009 – Neulasta!
March ??, 2009 – A CT Scan was scheduled. Both oncologists double teamed and had everything scanned so I would not need two tests. This will now be a regular test.
March ??, 2009 – I met with my doctor and we went over the results of the CT scan. No spread of the original cancer, so that is good! I did not hear the official words, but I assume this means I am in remission. I will need, though, to see her every 3 months for the rest of my life, as well as blood testing every three months and CT scans every six months. (Better than an appointment every 3 weeks!) But, I still needed to see my urologist/onc for the mass on the adrenal gland, and the CT scan showed something on my colon!
April ??, 2009 – I met with the gastro for the colon, and ended up having a colonoscopy…everything looked good from the inside, but will have to have the rest followed up on when I have surgery next.
April ??, 2009 – I got to see the urologist/onc for the adrenal gland. He was supposed to do the surgery after 5 weeks had passed since the last round of chemo, but looks like this was a “no go.” The doctor knows my track record, and is afraid I will not heal. So, he wanted me to wait another 3 months, as it “looks” benign anyhow. (However, that’s what they said about my ovary, too, and that ended up being cancerous.) The mass is about 12 cm, so it WILL have to go, along with my gland, eventually.
April ??, 2009 – I started going back to work, after a long disability, as I was not going to be having surgery for a while.
Thursday, May 28, 2009 – About two weeks earlier I noticed a bulge on the left of my incisional scar from the surgery. After my family and friends bugged me about it, I went to see my regular doctor. (Not the cancer doctors.) She suspected it was a hernia. She decided to send me for a CT Scan for the following Tuesday. To this point all I felt no pain unless it was touched.
Friday, May 29, 2009 – I started to get pain when I woke up the morning after the doctor visit. I assumed this was because of the exam itself.
Sunday, May 31, 2009 – In the afternoon, I started getting dizzy and nauseous. By the time I left a friend’s party, I felt sicker, and on the way home I started vomiting. After I got home, I vomited again. I was starting to get a bit freaked out, because my doctor had pointedly asked if I was able to hold food down, and by the evening, I could not even hold water down.
Monday, June 1, 2009 – I did not eat most of the day. I called the doctor, who told me to just hang in until the next day’s CT Scan. After being harrassed by my family, I called the Cancer Institute, who told me to head to the Robert Wood Johnson ER. I got the CT Scan there, and ended up bring admitted. (Again, cancer ward was out of room, so 8 Tower was the destination again.)
While at the hospital, they determined it definitely was a hernia, but not in any immediate danger. They opted to stabilize me, instead, because a hernia operation on an emergency basis meant I would have to still have the other operation still, too.
Thursday, June 4, 2009 – The cancer ward finally opened up a room, so I was transferred.
Thursday, June 5, 2009 – I was discharged. The decision was made to combine surgeries. (For the hernia and the adrenal gland.) I will be meeting with the surgeon soon to discuss and coordinate doctors.