I thought I should post an update for any one reading this and going through a molar.
We now have two beautiful boys, my hair grew back better than everever I'm running my first half marathon this weekend.
😍😍
Thursday, 15 February 2018
Tuesday, 14 May 2013
The Con Ception
A few weeks ago as my 30th birthday loomed I reflected on my twenties. I joked to my husband Chris that so much had happened in the last decade. Just to name a few events in no particular order I had:
The Positive Test - 1/03/13
I have always been a bit of a party girl so when Chris and I decided to try for a baby I tried to mellow down a bit. Several months passed and with no success I thought I better up the ante and basically stopped drinking and cut my social smoking (A terrible habit I had developed when drinking). One month later on the 1st of March we finally got our positive test. I thanked my stars that finally this had happened and everything was working OK. I calculated that I was 4 weeks pregnant and happily downloaded apps to learn how my baby was developing week by week. I had a friend that had experienced an early miscariage a few months before but that didn't stop us telling close friends and family, all of which were ecstatic. Having planned a week on the Gold Coast earlier in the year, we packed our bags soon after finding out our good news and headed over to see a few close friends and my brother and his family. Our happy news was rejoiced, and a bottle of moet was opened to toast our pending arrival (None for me of course!) We joked and laughed about how different Chris and I's lives were going to be in less than year and teased Chris that maybe it was twins. I was happy to have the week off as I was getting so tired already, I happily napped during the day thinking it was a combination of early pregnancy and the three hour time difference. Light nausea started to set in but all in all, I was feeling alright.
Shadow of doubt - 20/03/13
On my first day back at work after our trip, less than 3 weeks after my positive test my heart skipped a beat as I went to the toilet and noticed a brown spot in my underwear. Fear rose up in my throat and suddenly this was no ordinary day.
Scan no 1 - 20/03/13
Following my findings I notified Chris and rang the Doctor begging for the next available appointment - they had one that afternoon. Panic stricken I contacted my friend in Australia who calmed my nerves and said brown spotting was probably OK as long as it wasn't red it was old blood. Feeling a little better I naively told Chris not to worry, to stay at work and I would call him after the checkup. My regular doctor was not working that day but I didn't care - I just wanted to see anyone to confirm it was all OK. The doctor was positive also saying that brown spotting can be quite normal and given it was a small amount all was probably OK. She said we had two options monitor my HCG levels which should be doubling every 2-3 days or go for an early scan. She did warn me that if my dates were out even a week we might not see anything on the scan. At this point I was only 6 weeks so it was very early days. I took the scan and it was organised for later that day. Feeling confident everything would be OK and a heartbeat would be seen nothing prepared me for the words of the Sonographer "It's not good news I'm afraid love" All that was visible was a sac measuring 4 weeks gestational size - all I could see on the screen was a big black hole. I rang Chris who rushed home from work to meet me.
I barely heard the Sonographer advise that in order to confirm that it wasn't just a case of wrong dates we needed to rescan in a week. I had hardly made it home when the doctor called having received the scan results. She arranged bloods that day to check the HCG levels so we had some more information, she reassured me that it could just be too early to see anything and not to panic. Needless to say I didn't sleep much the next few nights and the waiting began.
HCG readings
For those of you that don't know what HCG is "The hormone human chorionic gonadotropin (better known as hCG) is produced during pregnancy. It is made by cells that form the placenta, which nourishes the egg after it has been fertilized and becomes attached to the uterine wall. Levels can first be detected by a blood test about 11 days after conception and about 12 – 14 days after conception by a urine test. In general the hCG levels will double every 72 hours. The level will reach its peak in the first 8 – 11 weeks of pregnancy and then will decline and level off for the remainder of the pregnancy"
After a few days we had two HCG readings the first 27,000 which I was assured was a good number for 6 weeks gestation, followed by a Saturday reading of 30,000 which was low enough for the midwife to advise this "looks like a non viable pregnancy" Having some closure I started to accept that things were not good. That changed again the following Monday morning when my regular doctor called and asked for another HCG reading which came back at 58,000. Having gone from 30,000 to 58,000 he believed things might be OK. The rollercoaster of emotions was beginning!
Scan Number 2 - 28/03/13
The 8 day wait between the first scan and the second felt like a year. Each day I woke up counting down the days until we would have some certainty over this pregnancy. Chris and friends urged me to stay positive. The hardest thing was accepting that this was not something I could control and I just needed to wait and see how things panned out. Scan number 2 turned out to be a ray of hope. The sac had grown and now measured 5 weeks gestation age. It looked like I had ovulated late and my dates were out by two weeks (At this stage I thought I was 7 weeks gestation) Again Chris and I were happy. We breathed sighs of relief and counted our lucky stars - it was all going to work out. We were told it looked good but we weren't out of the clear yet - Another scan was booked for a week later where we should see a heartbeat. Once a heartbeat is seen the chance of miscarriage drops drastically.
Scan Number 3 - 4/04/13
As the week progressed I started to feel more and more nauseated, my HCG levels were rising and I had very minimal further spotting. We went to this scan with excitement ready to see our babies heartbeat.
Sadly at this scan there was no heartbeat and no further growth, again just an empty sac. For the last time we heard the words non viable. We left with heavy hearts but took relief in the fact that we were young and we could get pregnant. I thanked fate that this had not been an ectopic pregnancy as couldn't imagine the devastation of losing an ovary following this terrible sequence of events.
Misoprostal Round 1 - 5/04/13
Given I had still not actually miscarried the baby and there was still clearly a gestational sac something needed to be done as my risks of infection were growing. After much discussion with the Midwife and Doctor we decided to go for the low risk option of miscarriage inducing drugs called misoprostal. They were inserted near the cervix and not guaranteed to work. If they were unsuccessful I would need minor surgery called a D&C to remove the remaining tissue. Misprostal would be administered at the hospital where I would be monitored for a few hours then go home. I opted for a Friday appointment so that I would have the whole weekend to recover.
The first sign that this was going to be an ordeal was the script of codeine, panadol and anti nausea pills. Some light cramps started but I could handle it. We headed home and I took some panadol, within two hours I couldn't quite get comfortable and then all of a sudden the pain intensified. It made the earlier cramps feel like a tickle. I moved from position to position standing, bending, crawling on the floor - nothing helped. The overwhelming pain was everywhere my lower back, my stomach, my uterus, everywhere. Nausea kicked in and I violently vomited during the pain waves. Somehow the vomiting allowed some relief from the pain and I was able to take some codeine. Again the pain kicked in, Chris rubbed my back urging me to breathe and that it was almost over. Finally after about one hour of cramps they stopped and almost immediately the bleeding started. A lot of blood was lost over the weekend and I was sure this was the end of it. Chris and I rejoiced in the fact it was over and that I had made it through the worse. Finally I thought my life would be back to normal
Follow Up Appointment - 15/04/13
Normal practice is that after a round of misoprostal the patient returns for another scan to confirm all the tissue has passed. HCG levels are also monitored before and after the misoprostal. I was relieved to get the call from the hospital a few days after my misoprostal experience to say that my HCG had dropped from 128,000 pre miso to 28,000, It looked like it had worked and I was assured it can take a while for the hormones to drop completely to zero.
Given this good news coupled with the immense pain and amount of blood I had lost I was expecting my scan to be all clear. Chris and I arrived at the hospital for our scan in good spirits. Again we were crushed to be told that there was 3cm of tissue left in my uterus meaning the misoprostal had not worked completely. We were given 2 options: Another round of miso or the D&C operation. Given D&C is invasive surgery formed under general anesthetic and has risks associated again we chose the misoprostal. The Midwife assured us that time time only an oral dose would be required and it would be less painful than my last round since there was such a small amount of tissue left.
Miso Round 2 - 15/04/13
This round was relatively uneventful. There was a fair bit of bleeding but none of the pain like the first time. Given the lack of pain I was dubious as to whether this round had worked.
Follow up Scan- 24/04/13
We returned for the follow up scan and my fears were confirmed when we were told that 2.8cm tissue remained. By now I was well and truly over this debacle so we decided to go through with the D&C. The next available slot was the Monday
The golf ball - 27/04/13
Given I had done everything I could to avoid the D&C, I was gutted and felt like we were admitting defeat by getting the operation. Chris consoled me saying it would be all over soon. A day operation, the D&C would be completed in the morning under general anesthetic and I was told to expect cramps for a few weeks following the operation. The D&C was booked for Monday morning. To my surprise on Sunday morning with absolutely no pain I passed what appeared to be a golf size ball of grey tissue. Chris and I high fived and really thought that this time it must be over, surely that was what they could see on the scan and I wouldn't need the surgery after all. Finally my body had done what it needed to do.
I rang the hospital and was advised that I should still attend my Monday morning appointment and discuss with the doctor prior to the surgery.
The D&C - 29/04/13
Feeling confident that I would not need surgery Chris and I arrived in good spirits even after almost getting locked in the carpark and a trip home as we had forgotten out wallets.
The doctor greeted Chris like he was an old friend and it turned out they had gone to University together. We marveled at how small NZ is. We described my situation and she arranged a scan to ensure that nothing was left so we could go home. This scan showed 2cm of tissue remaining. Speechless Chris and I could not understand how there could be anything left following the Sunday golf ball event. Back to theatre I went and the D&C was performed.
Apart from inserting an IV line in my arm it was a painless procedure and I was informed in recovery that it had gone very well with minimal bleeding. They wheeled me back to Chris and again we marveled that yes now it was finally over. Recovery was quick and I felt myself again in no time.
The Call -8/05/13
I never leave my cellphone at home but this day I was in a rush, as I was feeling a bit seedy in the morning and I had told Chris to go ahead to work and I would catch the train allowing me an extra hours sleep. I woke my head pounding but figured panadol would fix it. Having had so many days off work already I didn't want to call in sick again. I had tried to keep the previous events on the down low and hadn't told anyone the specifics at the Customer Site where I was working. It was a freezing, blustering Wellington day and the train had been cancelled due to a slip on the tracks. As I waited outside for the bus replacement I wondered what virus I had caught that was causing me to feel like this. The bus arrived and as we maneuvered around the ngaio gorge a familiar nauseous feeling came over me. I knew I couldn't be pregnant so quickly but I certainly felt it! I arrived home late that night and immediately checked my cell. Again my heart missed a beat as I listened to the message. My histology results from the D&C were back and they were abnormal. I needed to see a doctor in the next day or so. Playing it back to Chris on speaker panic kicked in. I tried to call the hospital but the night staff couldn't find any record of what had gone wrong. Frantically I googled every condition and convinced myself I had cancer. Chris calmed me down assuring me it was probably just something trivial. however again I did not sleep that night.
Molar Pregnancy - 9/05/13
The Woman's clinic was back at 8am so we went to work early and I called them at 8am on the dot. I was advised that I had a molar pregnancy and I needed to come in so they could do lung scans and check my HCG levels to check they were dropping post the D&C. Chris and I rushed to the hospital where I was told I had a complete molar pregnancy. This was explained - It was a very rare condition (1 in 1500 chance) where I had produced a blank egg and it had been fertilised by two sperm which meant it had turned into a lump of tissue or tumor that could potentially metastasize and turn into a rare form of cancer if not treated quickly. We needed to test my lungs to ensure there was no cancer spreading there. We were told the statistics were on our side and it was unlikely any further treatment would be required. If my HCG was dropping and the lungs were clear my HCG would be monitored for a year and we could then try to conceive again. One year felt like a slap in the face, I remember being amazed that this was happening to us. Again we consoled ourselves it was only a year and it would go fast. We would go on overseas holiday and it would be here before we knew it, after all I was only 29.
The tests were performed. The HCG results came back first 50,000 significantly higher than it had been just before the D&C (14,000) which meant we had an issue. I was in the small 15% group where the D&C had not fixed my molar pregnancy. I was to be refereed to oncology as it was likely I would need chemotherapy to kill whatever was growing. The lung x-ray came back clear. Given the high level of HCG the Specialist ordered a CT, MRI and ultrasound they wanted to be sure that it had not spread. The chemotherapy prognosis had me in hysteria, I knew that chemotherapy can cause infertility and that fear and the stress of this awful experience caused me to breakdown and the stress of the weeks before came rolling out. Thankfully the hospital organised an Gyno Oncologist to discuss the possible scenarios which slightly alleviated my fears. Low dose chemo would not effect my fertility and they were confident they could treat this. Chris and I went home where I googled for hours and had another sleepless night. The next day we would return to the hospital for the ultrasound, MRI and CT scan.
Ultrasound, MRI and CT Scan - 10/05/13
I had to fast as no food was allowed before the CT scan, so with a my belly rumbling we headed to the hospital again. First off the rank was the ultrasound. I badgered the Sonographer for any information about what she could see. From what I could gather ovaries looked OK but there was an area in the Uterus she couldn't see well enough to understand whether it was remaining tissue or something else. Again fear kicked in. As we waited to speak to the doctor I googled and messaged a close friend who with her medical knowledge had been a sounding board and fellow researcher throughout this entire process. Again I was told to breathe and wait for the doctor. Meanwhile a nurse came over and took more blood for an other HCG test, I found out later that this one came back even higher - 54,000. Unable to wait any longer I begged the nurse to see the ultrasound findings. She handed me the faxed report. Whilst the ovaries looked OK the uterus was enlarged and there was an area that they couldn't rule out was an invasive mole. From all my googling I knew that an invasive mole meant that the tissue was growing in the uterus wall which had higher risks of turning to cancer and spreading. Chris was calm and a tower of strength but once again I was in panic mode. I sent a picture of the report to my friend who agreed with Chris and pacified me by saying it was still positive - the ovaries were OK it had not spread. The doctor arrived shortly after and advised they were getting a Specialist over to discuss the findings with me. The Specialist confirmed my suspicions, they couldn't rule out an invasive mole we needed to see more detail from the CT and MRI scans. An appointment was setup with oncology on Monday morning when the results of the CT and MRI scan would be back. I was advised that if I had any bleeding over the weekend to return and low dose chemo would be administered as it would likely mean my mole had grown through the uterus wall. We head over to radiology for a long wait due to the need to drink a concuction periodically for three hours before the CT scan so they could see my liver. Still fasting by this point I was ravenous! A line was put in my arm and dye was injected to help read the scans. Friday night we headed home unsure what to think and again it was a long weekend waiting.
Oncology Meeting 13/05/13
Our meeting was at 9am so we figured we would head over to the Hospital early and get breakfast at a cafe. Astoundingly all the cafe's around the hospital were shut, We ended up having wishbone at the hospital so we had some time on our hands. Nervously we waited in the waiting room and at 9am were promptly called to our appointment. I was told that the scans showed that there was quite a bit of tissue in the uterus and wall which meant we needed low dose chemotherapy. There were some lesions on my lungs but these were most likely unrelated to the mole and we would scan again at the end of treatment to confirm. My liver, kidneys and ovaries were all clear. I was in the low risk category with a rating of 4. My disease was highly curable with chemotherapy. We were told we could wait a day or two to get our head around it but we chose to start on methotrexate that day which would consist of 50mls injected intramuscularly(jabs in alternating butt cheeks) every second day week, on week off and on the days off during treatment I take calcium folinate orally.
Methotrexate has minimal side effects and I was told I might feel tired and slightly nauseous. If at any stage the mole stops responding to the methotrexate then a different drug with worse side effects will be used (this is unlikely) We were told we have a higher chance of a repeat molar in future pregnancies (1 in 100) and to allow for a two year wait for conception in case my HCG starts to rise again in the coming months, at a minimum it will be one year after my HCG reaches zero. It could take months for my HCG to fall to zero so we still have a road ahead. Throughout this whole journey my biggest concern has been that we would be unable to have children of our own one day, we know this is unlikely and I am so thankful I am in the low risk category.
Injections - 15/05/13
I had my second injection today, I am feeling a bit tired and have a headache but that could be due to the high HCG level in my system. The next HCG reading will be on the 27th May where hopefully we will find the HCG level will drop. On the upside I am vastly getting over my fear of needles :)
I have started writing this blog ;D
First Checkup.. Jacinta 1/Mole 0 :)27/05/13
Today was the first checkup since starting the shots, I have been feeling pretty good really just a bit tired.
Turns out my HCG was up to 65,000 the day we started the first shot and has now dropped to 40,000. So we are coming down which is good :) Hoping for big drops in the weeks to come. Liver tests and blood cell counts were all good as well. A pretty good outcome really :)
Next measure will be taken 10th June. Also started the second round of shots today so next one is on Wednesday.
Second Checkup - 10/06/13
Just a quick update for those watching, will load some more details later ;)
Well it has been an interesting month, Unfortunately I don't seem to ever get better at waiting and feel pretty anxious come appointment day:( Liver and blood cell counts were all good again today and HCG has dropped to 25,000. This is a good drop but the doc is concerned that it is not dropping fast enough so she is giving the methotrexate shots two more weeks - or we move onto some harder drugs - actinomycin. These will have worse side effects like hair loss so please cross everything for me that these next two weeks have a HUGE drop!!!
Had another jab in the butt cheek today. Going to be another long two week wait!!
Third Checkup - 24/06/13
Sorry have been a bit slack of late there has certainly been lots going on! The third checkup reading was 16,000 which was not enough to keep the specialist happy so we switched to Dactinomycin.
I had a early blood draw on the 14/06 and the levels were still at 25,000 so I had an inkling the change was likely. I was very surpised that the levels fell from 25,000 to 16,000 in the week of no treatment - those bad cells are fighting for dear life!!!
Anyway given we expecting harder druges were to come and I had been quite sick of late - just nausea, headaches and extremelly tired (I had already took a fair bit of work off in the last few weeks and work had been amazing about it) I decided to resign and not worry about work until I am all 100% better, this will also mean we can get a holiday in once I am all better and not rush back. I am really lucky that we can do this and my heart goes out to all the women that have to work while getting treatment. I thought I could do it but was just getting too exhausted.
The specialist thinks that there is a 70% chance the dactinomycin will work and if not we move to the hard stuff - EMA/CO. She wants to see weekly 50% drops in the HCG levels and we are giving dactinomycin 2 cycles or one month to work. In order to try and keep my hair we will split the dose so instead of one big dose we will do 5 small ones over 5 days: Monday to Friday. This should mean I don't lose my hair so I am all for that
1/07/13 - First week of Dactinomycin complete
Let's be honest - I was pretty gutted that Dactinomycin was to be given via IV, that means a IV line inserted every day for 5 days for the week on. Big kudos to the nurses on the Oncology ward as it is not even a big deal! They put a hot wheat pack on first and use a tiny needle and it hardly even hurts!! I have learnt a yellow package means a baby needle and check just to make sure each time ;) I have definitely had bad experiences the other few times I have IV lines inserted, no departments mentioned!
The whole thing including the drug administration is over in about 5 minutes.
The week started OK, first IV and I was like pfft this is easy I could of kept working, day 2 and 3 I was a bit tired and happily took afternoon naps. Day 4 and 5 things started getting nasty :( Bad, bad stomach pains and incredible nausea with both ends going and no appetite (this is very rare for me) :( This peaked on Saturday and Sunday which surpised me as I was expecting the days I actually got drugs (Monday to Friday) to be the worse. But I guess just goes to show how long the drugs stay in the system.
We got a sneak peak at what the HCG was doing on Friday and it was sitting at 13,000 so still a drop but not the 50% drop the Specialist was hoping for in the first week, but it was also was taken before Friday's dose of dactinomycin so hoping for some magic before the next draw 5/07. If it has halved both weeks as she would like I should be sitting on 4000 or below - Oh how I hope that is the case! I would be so happy to be in the 4 digits!
Monday today and I am finally starting to feel back to myself so looking forward to a week off feeling ok :) Will also see if any other options for nausea meds at the next appointment at the hospital as last few days have not been fun :(
Everyone - Thinking of a number below 4000, thinking of a number below 4000 :)
Fourth Checkup - 8/07/13
Great news!! HCG is now at 2000 so it looks like this drug is working :)
Such a relief and today at the appointment we actually talked about expected end dates, so nice to think the end is in sight :) Best case we have about 10 weeks left as one month of treatment is required once HCG is at zero.
So So So happy and relieved :) Let's hope we keep dropping at this awesome rate and this drug keeps nailing the baddies :)
Thanks everyone for all the support and thoughts and prayers it looks like it is working!
We also got some new drugs so hopefully this round of treatment is a bit more pleasant than last time. I will also be getting steroids with each dose now - I may be the size of a house once this is over but plenty of time to lose weight right :) Will keep you posted how I go
EMACO - 27/07/13
The white counts are up :) They rose really quickly which made me feel HEAPS better which was so good, I could feel them rising that is how dramatic the change was. They really know what they are doing here!
Mouth is healing nicely and feeling pretty good so we are ready to start the next round of chemo.
The HCG jumped a bit the last couple of days, it was 56 yesterday and 61 today so we start on the harder chemo today EMACO.
This consists of a cocktail of chemos day 1 today is
I now have a wide selection of meds to combat side effects so heres hoping the sailing is smoother even though harder chemo - It should be!!!
I also signed a form today so they could use me as an example in teaching classes hehe - always knew I was special lol
The lab is trying to find the methotrexate now (seems to have got a bit lost ;)) and then we start that for a 12 hour slow push.
Tomorrow is another cocktail round of different drugs, I will post tomorrow what they are :) Best case if I am OK after the chemo we go back home on Monday and come home in the day for more chemo on Saturday the 3rd of August
Oh and Chris got me a kick arse bracelet for my 30th look on facebook to see hehe ;)
This stuff is going to work, bye bye nasties!!!!!!!!!!!!!!!!!!!!!!!
EMACO 28/07/13
Well we got through yesterdays round one of treatment all good and it even went all night ! 14 hours total or somthing
Today was nothing just a few hours of the same drugs as yesterday in smaller doses and some folinic acid to offset the methotrexate from the first day so hopefully my mouth sores don't come back.
I am feeling great, the mouth is also practically healed I can eat without pain relief - well almost just have a mouth wash but will be back into those corn chips in no time :) Let's hope it stays like that and this stuff works - doc reckons over 90% chance which is best odds we had so far so please, please let me be in the group that will be fixed and all back to normal!
I will be meeting the doc today to find out when the first HCG reading will be taken and hopefully get my script to go home. That will be a big script lol.
Hopefully will go home today since feel so good I am sure that is the case. Bianca is going to be here soon so she will take me home if we go in the morning - yay thanks B.
Let you know when I am at home ;)
Home Sweet Home - 29/07/13
I got to go home, I got to go home :) You should of seen the script - took the chemist 45 minutes to make it hahah, - Bianca thanks for taking me and waiting while he made it all too xx
Feeling all good just a bit tired. I take it pretty easy round the place ;)
They have me on an antidote for the first few days that I have to take oraly every 6 hours on the dot. The antidote was started 24 hours after the big king pin 12 hour infusion of methotrexate. Basically the chemo will do it's damage in the first 24 hours then we want it to leave my mouth alone so I don't get the sores back and we can keep doing chemo so we antidote. So far so good, up at 10.30pm and 4.30am but no big deal straight back to sleep :)
Chris also has to give me a tiny shot for the first 5 days each night in my tummy for my white blood cells. He is kick a,@Se at it - actually better than some nurses;)
EMACO - Round One Dusted 2/08/13
Fantastic news today folks
I went back to the hospital today for the last day of treatment in this cycle (day 8) and we tested all the bloods as well and HCG is at 13! Yes one three - thirteen. I had to get the Doctor to repeat it once she told me! I almost fell off the lazy boy
PEOW PEOW
Today's chemo was the new one I have not had yet and took about two hours, so far so good. Not feeling sick just a bit tired.
The Doctor told me we can't get excited yet as technically we should be testing HCG fortnightly for her graph of progess which is next friday, but she was stoked and I know it is definataly a good thing. Zero is so close!! Once we are at zero we have 2 cycles or one month of treatment left.
This EMACO is good stuff :) I think everyone at the hospital was pleasantly surprised with the awesome drop. There is a girl on the molar chatroom that calls EMACO glitter in her veins - sure is something good!
I feel so relieved, we are almost there! It really feels like the end is in sight and this will all be over soon. Very happy Schultz house tonight xoxox
EMACO - Round 2 09/08/13
More great news - My HCG is now just at 4. So I am in the single digits and my Specialist is stoked and confident that we will not need to change chemo again now. She said if it is at zero in time for round 3 we only have 2 rounds left. I am feeling so happy today :) In one to two weeks I will have a permanent timeframe on how much time we have left to go but it will be minimal weeks not months :)
Round 2 days 1 and 2 have gone without hitch again, I am not feeling sick at all. My red cells were low so I had to get a blood transfusion which grosses me out a bit but trying not to think who's blood I might of got hehe. It looked very true bloodish going down the PICC line ewwww.
The Specialist also said that once I am healed I will need to get monthly blood draws to check full blood counts and that the HCG is still at zero and 3 monthly chest xrays just to check all is in order for a year. She did say the chances of relapse are very remote - she has only seen two cases in her entire career so looks like we are on the home stretch. How great it is going to be to get back to normal! I will have to start looking for a new job soon - really looking forward to getting back to work and business as usual :)
Feeling happy, fortunate and blessed - Thanks for all the support thus far peops I couldn't of done it without it and of course thanks to the best husband in the world nurse Chris Schultz who can even give needles now :) And of course big thanks to my awesome specialist Anne O'Donnell who has treated this disease as efficiently and effectively as possible - I am so lucky to have had such good care!!
14 weeks of chemo down and not many to go - Yeeha :)
SOooo Close 26/09/13
I haven't posted for a while as was just hoping to do one final molar post once chemo was finished but thought I should put an update on in the meantime since it is taking a bit longer than expected.
I reached zero on August 30th so just on the maintenance rounds now.
Things haven't gone exactly to plan as the last chemo has been delayed now as my white cells were too low. This is pretty common with chemo in the last rounds apparently - my body just isn't recovering as quickly as it's getting a bit tired with all the chemo.
I have also been having issues with the PICC line - the dressing has started giving me a really bad irritation and it was so bad today combined with not being able to get blood out of the PICC that I had to get an xray just to make sure it wasn't infected inside the line. Apparently if it gets infected inside the line that is really bad like blood poisoning :S Luckily they don't think it is infected in the line but I am on antibiotics and back to hospital tomorrow to get some special concuction put down the line to clear it all out so hopefully it works again and we can get blood from it and give chemo on Saturday:) Just to gross you out here's a pic - caution not for the faint hearted haha
Anyway my awesome nurse Vicky has sorted it out with a nice bandage that lets it breathe and hoping that chemo can go ahead on Saturday as I have flights booked to CHCH for the following Tuesday, really hoping to get down there to see everyone and my new nephew, also a besties baby shower on saturday!!
Will update soon once all done hopefully !!
- Lost a brother
- Found a brother I never knew existed
- Got a degree
- Changed jobs
- Moved to another City
- Been promoted
- Experienced the end of a long term relationship
- Been a bridesmaid
- Got Engaged
- Got Married
- Owned several houses, and sold several houses
- Owned a business
- Traveled overseas
- Lost a pregnancy
The Positive Test - 1/03/13
I have always been a bit of a party girl so when Chris and I decided to try for a baby I tried to mellow down a bit. Several months passed and with no success I thought I better up the ante and basically stopped drinking and cut my social smoking (A terrible habit I had developed when drinking). One month later on the 1st of March we finally got our positive test. I thanked my stars that finally this had happened and everything was working OK. I calculated that I was 4 weeks pregnant and happily downloaded apps to learn how my baby was developing week by week. I had a friend that had experienced an early miscariage a few months before but that didn't stop us telling close friends and family, all of which were ecstatic. Having planned a week on the Gold Coast earlier in the year, we packed our bags soon after finding out our good news and headed over to see a few close friends and my brother and his family. Our happy news was rejoiced, and a bottle of moet was opened to toast our pending arrival (None for me of course!) We joked and laughed about how different Chris and I's lives were going to be in less than year and teased Chris that maybe it was twins. I was happy to have the week off as I was getting so tired already, I happily napped during the day thinking it was a combination of early pregnancy and the three hour time difference. Light nausea started to set in but all in all, I was feeling alright.
Shadow of doubt - 20/03/13
On my first day back at work after our trip, less than 3 weeks after my positive test my heart skipped a beat as I went to the toilet and noticed a brown spot in my underwear. Fear rose up in my throat and suddenly this was no ordinary day.
Scan no 1 - 20/03/13
Following my findings I notified Chris and rang the Doctor begging for the next available appointment - they had one that afternoon. Panic stricken I contacted my friend in Australia who calmed my nerves and said brown spotting was probably OK as long as it wasn't red it was old blood. Feeling a little better I naively told Chris not to worry, to stay at work and I would call him after the checkup. My regular doctor was not working that day but I didn't care - I just wanted to see anyone to confirm it was all OK. The doctor was positive also saying that brown spotting can be quite normal and given it was a small amount all was probably OK. She said we had two options monitor my HCG levels which should be doubling every 2-3 days or go for an early scan. She did warn me that if my dates were out even a week we might not see anything on the scan. At this point I was only 6 weeks so it was very early days. I took the scan and it was organised for later that day. Feeling confident everything would be OK and a heartbeat would be seen nothing prepared me for the words of the Sonographer "It's not good news I'm afraid love" All that was visible was a sac measuring 4 weeks gestational size - all I could see on the screen was a big black hole. I rang Chris who rushed home from work to meet me.
I barely heard the Sonographer advise that in order to confirm that it wasn't just a case of wrong dates we needed to rescan in a week. I had hardly made it home when the doctor called having received the scan results. She arranged bloods that day to check the HCG levels so we had some more information, she reassured me that it could just be too early to see anything and not to panic. Needless to say I didn't sleep much the next few nights and the waiting began.
HCG readings
For those of you that don't know what HCG is "The hormone human chorionic gonadotropin (better known as hCG) is produced during pregnancy. It is made by cells that form the placenta, which nourishes the egg after it has been fertilized and becomes attached to the uterine wall. Levels can first be detected by a blood test about 11 days after conception and about 12 – 14 days after conception by a urine test. In general the hCG levels will double every 72 hours. The level will reach its peak in the first 8 – 11 weeks of pregnancy and then will decline and level off for the remainder of the pregnancy"
After a few days we had two HCG readings the first 27,000 which I was assured was a good number for 6 weeks gestation, followed by a Saturday reading of 30,000 which was low enough for the midwife to advise this "looks like a non viable pregnancy" Having some closure I started to accept that things were not good. That changed again the following Monday morning when my regular doctor called and asked for another HCG reading which came back at 58,000. Having gone from 30,000 to 58,000 he believed things might be OK. The rollercoaster of emotions was beginning!
Scan Number 2 - 28/03/13
The 8 day wait between the first scan and the second felt like a year. Each day I woke up counting down the days until we would have some certainty over this pregnancy. Chris and friends urged me to stay positive. The hardest thing was accepting that this was not something I could control and I just needed to wait and see how things panned out. Scan number 2 turned out to be a ray of hope. The sac had grown and now measured 5 weeks gestation age. It looked like I had ovulated late and my dates were out by two weeks (At this stage I thought I was 7 weeks gestation) Again Chris and I were happy. We breathed sighs of relief and counted our lucky stars - it was all going to work out. We were told it looked good but we weren't out of the clear yet - Another scan was booked for a week later where we should see a heartbeat. Once a heartbeat is seen the chance of miscarriage drops drastically.
Scan Number 3 - 4/04/13
As the week progressed I started to feel more and more nauseated, my HCG levels were rising and I had very minimal further spotting. We went to this scan with excitement ready to see our babies heartbeat.
Sadly at this scan there was no heartbeat and no further growth, again just an empty sac. For the last time we heard the words non viable. We left with heavy hearts but took relief in the fact that we were young and we could get pregnant. I thanked fate that this had not been an ectopic pregnancy as couldn't imagine the devastation of losing an ovary following this terrible sequence of events.
Misoprostal Round 1 - 5/04/13
Given I had still not actually miscarried the baby and there was still clearly a gestational sac something needed to be done as my risks of infection were growing. After much discussion with the Midwife and Doctor we decided to go for the low risk option of miscarriage inducing drugs called misoprostal. They were inserted near the cervix and not guaranteed to work. If they were unsuccessful I would need minor surgery called a D&C to remove the remaining tissue. Misprostal would be administered at the hospital where I would be monitored for a few hours then go home. I opted for a Friday appointment so that I would have the whole weekend to recover.
The first sign that this was going to be an ordeal was the script of codeine, panadol and anti nausea pills. Some light cramps started but I could handle it. We headed home and I took some panadol, within two hours I couldn't quite get comfortable and then all of a sudden the pain intensified. It made the earlier cramps feel like a tickle. I moved from position to position standing, bending, crawling on the floor - nothing helped. The overwhelming pain was everywhere my lower back, my stomach, my uterus, everywhere. Nausea kicked in and I violently vomited during the pain waves. Somehow the vomiting allowed some relief from the pain and I was able to take some codeine. Again the pain kicked in, Chris rubbed my back urging me to breathe and that it was almost over. Finally after about one hour of cramps they stopped and almost immediately the bleeding started. A lot of blood was lost over the weekend and I was sure this was the end of it. Chris and I rejoiced in the fact it was over and that I had made it through the worse. Finally I thought my life would be back to normal
Follow Up Appointment - 15/04/13
Normal practice is that after a round of misoprostal the patient returns for another scan to confirm all the tissue has passed. HCG levels are also monitored before and after the misoprostal. I was relieved to get the call from the hospital a few days after my misoprostal experience to say that my HCG had dropped from 128,000 pre miso to 28,000, It looked like it had worked and I was assured it can take a while for the hormones to drop completely to zero.
Given this good news coupled with the immense pain and amount of blood I had lost I was expecting my scan to be all clear. Chris and I arrived at the hospital for our scan in good spirits. Again we were crushed to be told that there was 3cm of tissue left in my uterus meaning the misoprostal had not worked completely. We were given 2 options: Another round of miso or the D&C operation. Given D&C is invasive surgery formed under general anesthetic and has risks associated again we chose the misoprostal. The Midwife assured us that time time only an oral dose would be required and it would be less painful than my last round since there was such a small amount of tissue left.
Miso Round 2 - 15/04/13
This round was relatively uneventful. There was a fair bit of bleeding but none of the pain like the first time. Given the lack of pain I was dubious as to whether this round had worked.
Follow up Scan- 24/04/13
We returned for the follow up scan and my fears were confirmed when we were told that 2.8cm tissue remained. By now I was well and truly over this debacle so we decided to go through with the D&C. The next available slot was the Monday
The golf ball - 27/04/13
Given I had done everything I could to avoid the D&C, I was gutted and felt like we were admitting defeat by getting the operation. Chris consoled me saying it would be all over soon. A day operation, the D&C would be completed in the morning under general anesthetic and I was told to expect cramps for a few weeks following the operation. The D&C was booked for Monday morning. To my surprise on Sunday morning with absolutely no pain I passed what appeared to be a golf size ball of grey tissue. Chris and I high fived and really thought that this time it must be over, surely that was what they could see on the scan and I wouldn't need the surgery after all. Finally my body had done what it needed to do.
I rang the hospital and was advised that I should still attend my Monday morning appointment and discuss with the doctor prior to the surgery.
The D&C - 29/04/13
Feeling confident that I would not need surgery Chris and I arrived in good spirits even after almost getting locked in the carpark and a trip home as we had forgotten out wallets.
The doctor greeted Chris like he was an old friend and it turned out they had gone to University together. We marveled at how small NZ is. We described my situation and she arranged a scan to ensure that nothing was left so we could go home. This scan showed 2cm of tissue remaining. Speechless Chris and I could not understand how there could be anything left following the Sunday golf ball event. Back to theatre I went and the D&C was performed.
Apart from inserting an IV line in my arm it was a painless procedure and I was informed in recovery that it had gone very well with minimal bleeding. They wheeled me back to Chris and again we marveled that yes now it was finally over. Recovery was quick and I felt myself again in no time.
The Call -8/05/13
I never leave my cellphone at home but this day I was in a rush, as I was feeling a bit seedy in the morning and I had told Chris to go ahead to work and I would catch the train allowing me an extra hours sleep. I woke my head pounding but figured panadol would fix it. Having had so many days off work already I didn't want to call in sick again. I had tried to keep the previous events on the down low and hadn't told anyone the specifics at the Customer Site where I was working. It was a freezing, blustering Wellington day and the train had been cancelled due to a slip on the tracks. As I waited outside for the bus replacement I wondered what virus I had caught that was causing me to feel like this. The bus arrived and as we maneuvered around the ngaio gorge a familiar nauseous feeling came over me. I knew I couldn't be pregnant so quickly but I certainly felt it! I arrived home late that night and immediately checked my cell. Again my heart missed a beat as I listened to the message. My histology results from the D&C were back and they were abnormal. I needed to see a doctor in the next day or so. Playing it back to Chris on speaker panic kicked in. I tried to call the hospital but the night staff couldn't find any record of what had gone wrong. Frantically I googled every condition and convinced myself I had cancer. Chris calmed me down assuring me it was probably just something trivial. however again I did not sleep that night.
Molar Pregnancy - 9/05/13
The Woman's clinic was back at 8am so we went to work early and I called them at 8am on the dot. I was advised that I had a molar pregnancy and I needed to come in so they could do lung scans and check my HCG levels to check they were dropping post the D&C. Chris and I rushed to the hospital where I was told I had a complete molar pregnancy. This was explained - It was a very rare condition (1 in 1500 chance) where I had produced a blank egg and it had been fertilised by two sperm which meant it had turned into a lump of tissue or tumor that could potentially metastasize and turn into a rare form of cancer if not treated quickly. We needed to test my lungs to ensure there was no cancer spreading there. We were told the statistics were on our side and it was unlikely any further treatment would be required. If my HCG was dropping and the lungs were clear my HCG would be monitored for a year and we could then try to conceive again. One year felt like a slap in the face, I remember being amazed that this was happening to us. Again we consoled ourselves it was only a year and it would go fast. We would go on overseas holiday and it would be here before we knew it, after all I was only 29.
The tests were performed. The HCG results came back first 50,000 significantly higher than it had been just before the D&C (14,000) which meant we had an issue. I was in the small 15% group where the D&C had not fixed my molar pregnancy. I was to be refereed to oncology as it was likely I would need chemotherapy to kill whatever was growing. The lung x-ray came back clear. Given the high level of HCG the Specialist ordered a CT, MRI and ultrasound they wanted to be sure that it had not spread. The chemotherapy prognosis had me in hysteria, I knew that chemotherapy can cause infertility and that fear and the stress of this awful experience caused me to breakdown and the stress of the weeks before came rolling out. Thankfully the hospital organised an Gyno Oncologist to discuss the possible scenarios which slightly alleviated my fears. Low dose chemo would not effect my fertility and they were confident they could treat this. Chris and I went home where I googled for hours and had another sleepless night. The next day we would return to the hospital for the ultrasound, MRI and CT scan.
Ultrasound, MRI and CT Scan - 10/05/13
I had to fast as no food was allowed before the CT scan, so with a my belly rumbling we headed to the hospital again. First off the rank was the ultrasound. I badgered the Sonographer for any information about what she could see. From what I could gather ovaries looked OK but there was an area in the Uterus she couldn't see well enough to understand whether it was remaining tissue or something else. Again fear kicked in. As we waited to speak to the doctor I googled and messaged a close friend who with her medical knowledge had been a sounding board and fellow researcher throughout this entire process. Again I was told to breathe and wait for the doctor. Meanwhile a nurse came over and took more blood for an other HCG test, I found out later that this one came back even higher - 54,000. Unable to wait any longer I begged the nurse to see the ultrasound findings. She handed me the faxed report. Whilst the ovaries looked OK the uterus was enlarged and there was an area that they couldn't rule out was an invasive mole. From all my googling I knew that an invasive mole meant that the tissue was growing in the uterus wall which had higher risks of turning to cancer and spreading. Chris was calm and a tower of strength but once again I was in panic mode. I sent a picture of the report to my friend who agreed with Chris and pacified me by saying it was still positive - the ovaries were OK it had not spread. The doctor arrived shortly after and advised they were getting a Specialist over to discuss the findings with me. The Specialist confirmed my suspicions, they couldn't rule out an invasive mole we needed to see more detail from the CT and MRI scans. An appointment was setup with oncology on Monday morning when the results of the CT and MRI scan would be back. I was advised that if I had any bleeding over the weekend to return and low dose chemo would be administered as it would likely mean my mole had grown through the uterus wall. We head over to radiology for a long wait due to the need to drink a concuction periodically for three hours before the CT scan so they could see my liver. Still fasting by this point I was ravenous! A line was put in my arm and dye was injected to help read the scans. Friday night we headed home unsure what to think and again it was a long weekend waiting.
Oncology Meeting 13/05/13
Our meeting was at 9am so we figured we would head over to the Hospital early and get breakfast at a cafe. Astoundingly all the cafe's around the hospital were shut, We ended up having wishbone at the hospital so we had some time on our hands. Nervously we waited in the waiting room and at 9am were promptly called to our appointment. I was told that the scans showed that there was quite a bit of tissue in the uterus and wall which meant we needed low dose chemotherapy. There were some lesions on my lungs but these were most likely unrelated to the mole and we would scan again at the end of treatment to confirm. My liver, kidneys and ovaries were all clear. I was in the low risk category with a rating of 4. My disease was highly curable with chemotherapy. We were told we could wait a day or two to get our head around it but we chose to start on methotrexate that day which would consist of 50mls injected intramuscularly(jabs in alternating butt cheeks) every second day week, on week off and on the days off during treatment I take calcium folinate orally.
Methotrexate has minimal side effects and I was told I might feel tired and slightly nauseous. If at any stage the mole stops responding to the methotrexate then a different drug with worse side effects will be used (this is unlikely) We were told we have a higher chance of a repeat molar in future pregnancies (1 in 100) and to allow for a two year wait for conception in case my HCG starts to rise again in the coming months, at a minimum it will be one year after my HCG reaches zero. It could take months for my HCG to fall to zero so we still have a road ahead. Throughout this whole journey my biggest concern has been that we would be unable to have children of our own one day, we know this is unlikely and I am so thankful I am in the low risk category.
Injections - 15/05/13
I had my second injection today, I am feeling a bit tired and have a headache but that could be due to the high HCG level in my system. The next HCG reading will be on the 27th May where hopefully we will find the HCG level will drop. On the upside I am vastly getting over my fear of needles :)
I have started writing this blog ;D
First Checkup.. Jacinta 1/Mole 0 :)27/05/13
Today was the first checkup since starting the shots, I have been feeling pretty good really just a bit tired.
Turns out my HCG was up to 65,000 the day we started the first shot and has now dropped to 40,000. So we are coming down which is good :) Hoping for big drops in the weeks to come. Liver tests and blood cell counts were all good as well. A pretty good outcome really :)
Next measure will be taken 10th June. Also started the second round of shots today so next one is on Wednesday.
Second Checkup - 10/06/13
Just a quick update for those watching, will load some more details later ;)
Well it has been an interesting month, Unfortunately I don't seem to ever get better at waiting and feel pretty anxious come appointment day:( Liver and blood cell counts were all good again today and HCG has dropped to 25,000. This is a good drop but the doc is concerned that it is not dropping fast enough so she is giving the methotrexate shots two more weeks - or we move onto some harder drugs - actinomycin. These will have worse side effects like hair loss so please cross everything for me that these next two weeks have a HUGE drop!!!
Had another jab in the butt cheek today. Going to be another long two week wait!!
Third Checkup - 24/06/13
Sorry have been a bit slack of late there has certainly been lots going on! The third checkup reading was 16,000 which was not enough to keep the specialist happy so we switched to Dactinomycin.
I had a early blood draw on the 14/06 and the levels were still at 25,000 so I had an inkling the change was likely. I was very surpised that the levels fell from 25,000 to 16,000 in the week of no treatment - those bad cells are fighting for dear life!!!
Anyway given we expecting harder druges were to come and I had been quite sick of late - just nausea, headaches and extremelly tired (I had already took a fair bit of work off in the last few weeks and work had been amazing about it) I decided to resign and not worry about work until I am all 100% better, this will also mean we can get a holiday in once I am all better and not rush back. I am really lucky that we can do this and my heart goes out to all the women that have to work while getting treatment. I thought I could do it but was just getting too exhausted.
The specialist thinks that there is a 70% chance the dactinomycin will work and if not we move to the hard stuff - EMA/CO. She wants to see weekly 50% drops in the HCG levels and we are giving dactinomycin 2 cycles or one month to work. In order to try and keep my hair we will split the dose so instead of one big dose we will do 5 small ones over 5 days: Monday to Friday. This should mean I don't lose my hair so I am all for that
1/07/13 - First week of Dactinomycin complete
Let's be honest - I was pretty gutted that Dactinomycin was to be given via IV, that means a IV line inserted every day for 5 days for the week on. Big kudos to the nurses on the Oncology ward as it is not even a big deal! They put a hot wheat pack on first and use a tiny needle and it hardly even hurts!! I have learnt a yellow package means a baby needle and check just to make sure each time ;) I have definitely had bad experiences the other few times I have IV lines inserted, no departments mentioned!
The whole thing including the drug administration is over in about 5 minutes.
The week started OK, first IV and I was like pfft this is easy I could of kept working, day 2 and 3 I was a bit tired and happily took afternoon naps. Day 4 and 5 things started getting nasty :( Bad, bad stomach pains and incredible nausea with both ends going and no appetite (this is very rare for me) :( This peaked on Saturday and Sunday which surpised me as I was expecting the days I actually got drugs (Monday to Friday) to be the worse. But I guess just goes to show how long the drugs stay in the system.
We got a sneak peak at what the HCG was doing on Friday and it was sitting at 13,000 so still a drop but not the 50% drop the Specialist was hoping for in the first week, but it was also was taken before Friday's dose of dactinomycin so hoping for some magic before the next draw 5/07. If it has halved both weeks as she would like I should be sitting on 4000 or below - Oh how I hope that is the case! I would be so happy to be in the 4 digits!
Monday today and I am finally starting to feel back to myself so looking forward to a week off feeling ok :) Will also see if any other options for nausea meds at the next appointment at the hospital as last few days have not been fun :(
Everyone - Thinking of a number below 4000, thinking of a number below 4000 :)
Fourth Checkup - 8/07/13
Great news!! HCG is now at 2000 so it looks like this drug is working :)
Such a relief and today at the appointment we actually talked about expected end dates, so nice to think the end is in sight :) Best case we have about 10 weeks left as one month of treatment is required once HCG is at zero.
So So So happy and relieved :) Let's hope we keep dropping at this awesome rate and this drug keeps nailing the baddies :)
Thanks everyone for all the support and thoughts and prayers it looks like it is working!
We also got some new drugs so hopefully this round of treatment is a bit more pleasant than last time. I will also be getting steroids with each dose now - I may be the size of a house once this is over but plenty of time to lose weight right :) Will keep you posted how I go
Dactinonmycin round 2
– when things go slightly bad…. 8/7/13 to 12/07/13
Has been a while since I posted as most of you would of seen
on facebook I have been in hospital so let me explain!
Whilst the HCG results looked good at the last checkup and
my blood counts were holding up OK something more sinister was happening in the
background, I will start at the beginning ;(
During the week on of dactinomycin it got increasingly harder to find a vein to
get the IV in, by Wednesday it took two goes.
I am not a needle person so was pretty distressed with this progression.
The Doctors decided that we would insert
a PICC line. For those of you that don’t
know what a PICC line is it is a peripherally
inserted central catheter or basically a line that goes directly in my vein in
my arm straight to my heart. Chemo can
be administerd via the PICC as can bloods, fluids pretty much anything that can
be via IV. For me this would mean no
more IV needles to administer the chemo so I was keen as :) We
managed to get the line installed on the 18th July and it was
relatively painless and very impressive.
They place the arm under local anathestic then using ultrasound guide
the tube up the vein to the heart, then an xray to check it is all connected up
nicely. It sounds gory but given the
choice I would do it again in a heart beat YAY for no more needles!!! I will
get some photos of it up when I get home to freak you all out :)
Another nasty side affect
that I had noticed during this round of dactinomycin was my hair was rapidly
coming out in chunks. It started with a
few hairs on the pillow but got to the point I was pulling out handfuls! I was hoping I wouldn’t lose my hair so was a
bit gutted about this but hey it grows back right. Given the rate it was falling out I was
pretty pronto on getting a wig. I found
a lady online Janine Antram who sold wigs http://www.sshairwear.com/about she is one amazing lady! She found me the perfect blonde wig and to be
honest it looks better than my hair ever has.
It is amazing how far wigs have come these days and if I had of known I
really think I would have been wearing one before now lol. I will get some pics up when I get home
;) Given the state of the hair (about 10
hairs on the head) we shaved mine on the 24.07. Everyone has genuinely (well I am pretty
sure it is genuine) been telling me how much I suit it but I think I will stick
to the wig hehe ;)
Things went really
downhill the day before my 30th birthday. This round of dactinomycin I was feeling sick
towards the end of the chemo but the following week really knocked me down. I had developed mouth ulcers or mouth
sores all over my tongue and it hurt to talk and I was struggling to eat or
drink. The doctor had prescribed some anaesthetic
to numb the mouth but it worked for about 10 minutes before wearing off. I was also pumping up on the codeine to no
relief.
My friend Megan was here so I got to spend the 19th July with her which was great and Nat
and Scott were also up for my 30th birthday so I was pretty gutted when
the sickness got so bad combined with vomiting and diarrhea that Chris had to
take me to the hospital on the 20th July, I was looking really
forward to seeing Nat and Scott as have hardly seen them all year. We were admitted
after a wait in A&E and they started me on IV fluids and got something
stronger to numb the mouth to try and help eat. It took a while but I started coming
right. After a night in hospital the
doctors agreed I could go home for the day on my birthday (21st
July) and gave me some of the stronger drugs to take while at home. This
meant I could see a bit of Nat and Scott as well. I was supposed to go back that night but as
we sat at home that night and enjoyed some sizeable earthquakes I thought I
would be OK through the night and we could go back in the morning. Just BTW what are chances of earthquakes not only on my birthday but while Nat and Scott are here from CHCH - talk about bad luck buddha Jacinta lol!
That night was horrendous - I was up all night with the
mouth and again was not getting much fluids, and the diarrhea and vomiting
picked up. Just feeling miserable really :) I must say that throughout this time Chris has been amazing, he makes the best nurse and is always looking out for me and watching what is going on. I am very lucky to have such a great husband, this experience would be much worse without him!!
We
went back to the hospital on Monday morning and I was admitted in the Oncology ward
where the doctors could give me better pain relief and keep an eye on me. I must say the pain relief is amazing I am in
virtually no pain and managing to eat and everything.
Admitted to Oncology ward – 22/07/13
It has been a bit of
an eye opener on this ward. I have seen
some very sick people and heard my roommate (an elderly lady) on the first night
get the talk about how they could not do anymore for her ;( There is also a girl next door to me now that
is only 32 and has relapsed luekemia and she is so bright and happy and bubbly. The people
here are really amazing how they just keep soldiering on and looking at the
positive side of everything despite being so sick. I am sure that many have been through so much
more than I have or don’t have such a good outlook as me but they don’t let it get
them down – it actually makes me realise how lucky I am that they can cure my
disease.
After being admitted
the doctors were keeping an eye on my blood counts. We were due to start round 3 of dactinomycin
on the 22nd of July but with the mouth and me so sick we couldn’t proceed. Over the last few days my white cell count
has increasingly dropped each day which means I have no immune system and we
can’t start the chemo. We started shots
in my tummy of white cells and blood thinners on the 24th July so the
doctor is hopeful that these will work quickly so we can get back onto the
chemo. Interestingly my HCG is still
dropping on the 24th July we were at 78 which is the lowest I have
ever been!!
The specialist
however wants this disease gone asap and wants bigger drops on the chemo so if
the HCG is not below 20 by the 27th July I will move to the next
line of treatment EMACO. This is more
powerful but should work quickly.
The aim is
to start the next round of chemo whatever it is EMACO or Dactinomycin on Saturday
the 27th July. I will be
monitored closely going forward so I don’t end up as sick as I have been and
will probably spend a bit of time in hospital if we need to do the EMACO as it
is more intensive treatment. We are almost
there though so I am OK with this. Just
want it over as quick as possible ;)
Just on a side note
EMACO should not impact my fertility either apart from to bring forward
menopause by 3 years – but I am only 30!
Will keep you posted
how I get on with the white cells and count on Saturday! Would be really nice to be under 20 so we
just continue with the Dactinomycin but either way it is not the end of the
world ;) as usual thoughts and prayers requested ;) xx
EMACO - 27/07/13
The white counts are up :) They rose really quickly which made me feel HEAPS better which was so good, I could feel them rising that is how dramatic the change was. They really know what they are doing here!
Mouth is healing nicely and feeling pretty good so we are ready to start the next round of chemo.
The HCG jumped a bit the last couple of days, it was 56 yesterday and 61 today so we start on the harder chemo today EMACO.
This consists of a cocktail of chemos day 1 today is
- Methotrexate
- Dactinomycin
- Etoposide
I now have a wide selection of meds to combat side effects so heres hoping the sailing is smoother even though harder chemo - It should be!!!
I also signed a form today so they could use me as an example in teaching classes hehe - always knew I was special lol
The lab is trying to find the methotrexate now (seems to have got a bit lost ;)) and then we start that for a 12 hour slow push.
Tomorrow is another cocktail round of different drugs, I will post tomorrow what they are :) Best case if I am OK after the chemo we go back home on Monday and come home in the day for more chemo on Saturday the 3rd of August
Oh and Chris got me a kick arse bracelet for my 30th look on facebook to see hehe ;)
This stuff is going to work, bye bye nasties!!!!!!!!!!!!!!!!!!!!!!!
EMACO 28/07/13
Well we got through yesterdays round one of treatment all good and it even went all night ! 14 hours total or somthing
Today was nothing just a few hours of the same drugs as yesterday in smaller doses and some folinic acid to offset the methotrexate from the first day so hopefully my mouth sores don't come back.
I am feeling great, the mouth is also practically healed I can eat without pain relief - well almost just have a mouth wash but will be back into those corn chips in no time :) Let's hope it stays like that and this stuff works - doc reckons over 90% chance which is best odds we had so far so please, please let me be in the group that will be fixed and all back to normal!
I will be meeting the doc today to find out when the first HCG reading will be taken and hopefully get my script to go home. That will be a big script lol.
Hopefully will go home today since feel so good I am sure that is the case. Bianca is going to be here soon so she will take me home if we go in the morning - yay thanks B.
Let you know when I am at home ;)
Home Sweet Home - 29/07/13
I got to go home, I got to go home :) You should of seen the script - took the chemist 45 minutes to make it hahah, - Bianca thanks for taking me and waiting while he made it all too xx
Feeling all good just a bit tired. I take it pretty easy round the place ;)
They have me on an antidote for the first few days that I have to take oraly every 6 hours on the dot. The antidote was started 24 hours after the big king pin 12 hour infusion of methotrexate. Basically the chemo will do it's damage in the first 24 hours then we want it to leave my mouth alone so I don't get the sores back and we can keep doing chemo so we antidote. So far so good, up at 10.30pm and 4.30am but no big deal straight back to sleep :)
Chris also has to give me a tiny shot for the first 5 days each night in my tummy for my white blood cells. He is kick a,@Se at it - actually better than some nurses;)
EMACO - Round One Dusted 2/08/13
Fantastic news today folks
I went back to the hospital today for the last day of treatment in this cycle (day 8) and we tested all the bloods as well and HCG is at 13! Yes one three - thirteen. I had to get the Doctor to repeat it once she told me! I almost fell off the lazy boy
PEOW PEOW
Today's chemo was the new one I have not had yet and took about two hours, so far so good. Not feeling sick just a bit tired.
The Doctor told me we can't get excited yet as technically we should be testing HCG fortnightly for her graph of progess which is next friday, but she was stoked and I know it is definataly a good thing. Zero is so close!! Once we are at zero we have 2 cycles or one month of treatment left.
This EMACO is good stuff :) I think everyone at the hospital was pleasantly surprised with the awesome drop. There is a girl on the molar chatroom that calls EMACO glitter in her veins - sure is something good!
I feel so relieved, we are almost there! It really feels like the end is in sight and this will all be over soon. Very happy Schultz house tonight xoxox
EMACO - Round 2 09/08/13
More great news - My HCG is now just at 4. So I am in the single digits and my Specialist is stoked and confident that we will not need to change chemo again now. She said if it is at zero in time for round 3 we only have 2 rounds left. I am feeling so happy today :) In one to two weeks I will have a permanent timeframe on how much time we have left to go but it will be minimal weeks not months :)
Round 2 days 1 and 2 have gone without hitch again, I am not feeling sick at all. My red cells were low so I had to get a blood transfusion which grosses me out a bit but trying not to think who's blood I might of got hehe. It looked very true bloodish going down the PICC line ewwww.
The Specialist also said that once I am healed I will need to get monthly blood draws to check full blood counts and that the HCG is still at zero and 3 monthly chest xrays just to check all is in order for a year. She did say the chances of relapse are very remote - she has only seen two cases in her entire career so looks like we are on the home stretch. How great it is going to be to get back to normal! I will have to start looking for a new job soon - really looking forward to getting back to work and business as usual :)
Feeling happy, fortunate and blessed - Thanks for all the support thus far peops I couldn't of done it without it and of course thanks to the best husband in the world nurse Chris Schultz who can even give needles now :) And of course big thanks to my awesome specialist Anne O'Donnell who has treated this disease as efficiently and effectively as possible - I am so lucky to have had such good care!!
14 weeks of chemo down and not many to go - Yeeha :)
SOooo Close 26/09/13
I haven't posted for a while as was just hoping to do one final molar post once chemo was finished but thought I should put an update on in the meantime since it is taking a bit longer than expected.
I reached zero on August 30th so just on the maintenance rounds now.
Things haven't gone exactly to plan as the last chemo has been delayed now as my white cells were too low. This is pretty common with chemo in the last rounds apparently - my body just isn't recovering as quickly as it's getting a bit tired with all the chemo.
I have also been having issues with the PICC line - the dressing has started giving me a really bad irritation and it was so bad today combined with not being able to get blood out of the PICC that I had to get an xray just to make sure it wasn't infected inside the line. Apparently if it gets infected inside the line that is really bad like blood poisoning :S Luckily they don't think it is infected in the line but I am on antibiotics and back to hospital tomorrow to get some special concuction put down the line to clear it all out so hopefully it works again and we can get blood from it and give chemo on Saturday:) Just to gross you out here's a pic - caution not for the faint hearted haha
Anyway my awesome nurse Vicky has sorted it out with a nice bandage that lets it breathe and hoping that chemo can go ahead on Saturday as I have flights booked to CHCH for the following Tuesday, really hoping to get down there to see everyone and my new nephew, also a besties baby shower on saturday!!
Will update soon once all done hopefully !!
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