2019/2020 Surgery
Well, we promised you an update in mid November and we thought it would be the last one. Unfortunately a lot has happened since our trip to UK, visiting parents, kids and grandkids. Sadly, the cancer has returned as a big lump on the left jaw line, close to the original surgery site.
After a series of consultations, CT and PET scans, the plan of attack is to have a series of seven immunotherapy infusions three weeks apart, starting on 17th December, another extensive surgery on 27th December to remove the tumor, and radiation treatment once I have recovered from the surgery.
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So, we start the waiting game again, and see what happens. Physically, apart from feeling tired, I’m fine. I have no pain, just a huge hole in my face where the tumor is making an attempt to escape (better out than in, right?).
I have full 100% confidence in my most excellent medical team, and trust them to do their best for me. I’m trying to look for the positives in all of this, and I hope that it works for me and, just as importantly, the research results help many more people in the future.
I am quite at peace in my mind with it all, and won’t think about “what if’s”. We just take one day at a time, and try to carry on a normal life.
It's going to be another long haul, and we are both grateful for all of the support that we have received. Andy will update again after surgery.
Christine and I spent the last two days at MDA downtown. It turns out that this was a complete waste of time, because, in their wisdom, the Ohio based leader of the immunotherapy program decided that Christine did not meet the necessary criteria. This, after four weeks of tests, approvals, consultations and boosting of expectations. We were not impressed.
What made it worse was the total lack of communication and empathy displayed by the program representative based in Houston. We were just about to go in to get the immunotherapy treatment, when she called for us go to another building, to meet with our oncologist. Despite calling her, emailing and paging her, she never even bothered to come and see us. She basically passed the buck. So unprofessional.
We waited another three hours before we finally go to meet with Dr. Blumenschein, who had unfortunately been backed up with other patients. He was equally as upset as we were, was very apologetic. He promised to take action to make sure that future program admission procedures would ensure that this does not happen again.
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This will be followed by about a week’s recovery in hospital. At the end of January, Christine will start six weeks of radiation therapy, with the option to also have chemotherapy if the pathology warrants it. The good news about not having the immunotherapy treatment, is that the radiation/chemotherapy treatment can now be done in Katy.
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Christine received has just a call from Dr Pytynia to say that the tumor had grown so much that she felt that surgery was not the best way forward. She would have had to take half of Christine's face away, and still would not be certain in removing all of the cancer. The course of action now is to have an aggressive chemotherapy treatment, probably starting on Monday. This systemic approach will hopefully kill any cancer within Christine's body, and shrink the cancer in her face. Once this was happened, we will revisit the surgery route. I will keep you all updated as we hear more.
After an amazing logistical effort by the team, in particular Dr Blumenstein's clinical nurse Jancy John, Christine had her first infusion of the induction chemotherapy treatment today. This was a six hour session at MD Anderson downtown having what is known as the TPF regimen. This consists of the drugs docetaxel, and cisplatin, which were administered intravenously, and fluorouracil, which is administered as a continuous 24-hour infusion for 4 days. These drugs have been FDA approved for this type of cancer for quite some time, but are administered much more often now because the side affects can now be managed more effectively with other modern drugs. This process is repeated every three weeks, after which there will be a scan, and blood analysis to review progress. It is likely that Christine will need at least three, if not four of theses cycles, before we can even consider surgery. Andy and Christine have subsequently received training on how to flush her catheter which needs to be done on a daily basis. We are hoping that once everything becomes more routine, all of the treatments can be moved to the MD Anderson satellite hospital in Katy.
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It’s been a roller coaster 2 weeks since the last blog entry. Chemotherapy resulted in about a week of extreme fatigue and mouth ulcers, but on day 10 things started to pick up a little and we saw some improvement. The tumor on my face stopped growing and started to diminish and just 2 weeks after starting treatment, the visible tumor withered away and dropped off. (If you’d like photos, pm me!)
Today was a follow-up meeting with both my team leader and oncologist. Both were amazed at the progress made by the chemo treatment in such a short time and were very encouraging for a final positive outcome. Of course there is still a very long way to go, but the plan now is to continue with 2 more rounds of chemo to eradicate any rogue cancer cells, followed by a repeat of the original surgery with additional facial reconstruction to remove all traces of the tumor. I have a surgery date of 13 March - a Friday....good thing I’m not superstitious! There will be more post operative treatment but this is unsure at this stage.
Meanwhile, we continue one day at a time and thank all those who are supporting us as we fight on. We have the best family and friends near and far, and we appreciate all the help and encouragement from all. We have been blessed with the best.
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Christine will be having her second chemotherapy treatment this coming Wednesday (1/22/2020). From experience of the first round, we will likely be radio silent for a week or so. Christine will become very fatigued and unable to talk to anyone for at a least week following this treatment. We were very lucky to have Thomas visit us over the Xmas period, and now Robert will be staying with us for a week from February 7th. Thanks again for all of your support, it is really appreciated. 
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Christine successfully completed her second chemotherapy treatment. Here she is, knitting her viking hat. Andy successfully had his Cardioversion treatment, which is a jolt of electricity to the heart to get it back in rhythm. What a pair we are!
If Christine responds the same way as the first bout of chemo, we anticipate a couple of good days, followed by about a week of extreme fatigue. Don't worry if Christine is unresponsive to emails or texts, she will get back to you as soon as she is able. Thanks again for the continual support, it is most appreciated.
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Since Rob was here for a visit this week, we thought we would treat him to a day at MD Anderson downtown! Although we are not, by any means, out of the woods, we received some encouraging news. Christine had another CT scan today, and scan images (on web page), shows the tumor that was identified on December 19th, has considerably reduced in size after the two rounds of chemotherapy. Dr. Blumenschein was absolutely gobsmacked with these results. Christine will be having a third round of chemotherapy on Wednesday, after which the remaining tumor will be surgically removed on March 13th. We both thank you all very much for your continual support and good wishes. Christine will likely be out of action from Saturday for five or six days due to the fatigue caused by the chemotherapy treatment.
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Finally today we got a plan. Christine's scan results on Monday were fabulous showing no tumor - it happens but it’s rare. So chemo is finished and we move on to the next stage.
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It’s a massive surgery that will take more than 12 hours, so an extra plastic surgeon is coming in to help. It’s not what we hoped for, but there’s no alternative. Let’s hope they get it right this time as I feel we’re right back where we were 10 months ago. 
As they are using tissue from the left arm, it’ll be difficult to text etc. so don’t expect a reply, although I will be reading any messages you care to send. Check in with Andy for the latest news. I expect to be in hospital for at least a week (13 - 20 March), then a long recovery at home, as before, followed by radiation treatment after a month or so. 
It’s been a long, hard 10 months so far, but they say what doesn’t kill you makes you stronger. At least we know what to expect in the next 10 months. I’ve asked for gold bolts in the neck as they seem to be turning me into Frankenstein’s monster!
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It’s been a long day. We left home at 4:30am, so that we could check in by 5:15am. Christine started surgery at about 8am, and it took over 12 hours to complete. She made it to the recovery room by 9pm, and finally made it to her ward room at 11:30pm. Coincidentally, just two rooms down from the one she had last year. I was able to see Christine for a little while and she was in good spirits, with her white board in hand (she has a trach and is unable to speak), teaching the nurses how the tubes etc. should be placed. I finally made it home by 2am this morning! 
It was a much more challenging surgery than last time, but was completed successfully and pretty well went according to plan. The process was complicated by the extensive scar tissue left from the previous surgery. 
Dr Pytynia, the cancer surgeon, was able to remove all the areas touched by the tumor, which meant removing part of Christine’s jaw and neck tissues. She was able to get “good margins” to healthy tissue. 
Dr Garvey, the reconstruction surgeon, used her left fibula bone, skin and tissue to replace her jaw. The inside of her lower left arm was used to replace the neck tissues that were infected. There is no skin graft on arm yet, as they will wait for it to heal before applying. The risk of graft failure was too high to attempt now. They were able to put a skin graft on her leg this time. 
Dr Hofstede, the oral surgeon, determined that the integrity of the new jaw bone was unsuitable for dental implants at this time, so Christine will have to have her new teeth positioned at a later date. Unfortunately the nerves were too damaged from the scar tissue removal for them to be reconnected.
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Kinda takes your mind off this Coronavirus business... 
Although Christine still feels pretty rough, not surprisingly, her wounds are healing nicely and she is getting some color in her cheeks again. She is frequently visited by her surgeons and their associates. The consensus is that she is meeting their expectations nicely. She still has five tubes/drains, other wires and attachments, which are quite irritating, but obviously essential. She is breathing through a tracheostomy tube, and will do so for at least three weeks. This is because it will take this time for the swelling to go down in her neck. I estimate that she has about 70 stitches in her neck, however the doctors are hopeful that these will be unseen once the swelling has gone down. Dr Garvey needs to attend Friday Stitch and Bitch for a natter! Christine, under the guidance of a PT/OT nurse, is walking around the nurses station a couple of times a day, which is brilliant. 
There have been a lot of ups and downs. Most annoying is the scheduling of the various nurse visits at random times during the night. I am sure it must be easy to schedule them to do their thing at the same time, rather than wake Christine up so many times. On the upside there is a considerable amount of expertise at MD Anderson, and we feel very grateful that we are able to use this hospital. 
My biggest gripe is how stupid people are. With Covid-19 all around, why would you still want to cram into an already full elevator? I had to have strong words. I think I will have to man up, and take the stairs. 
We expect that Christine will stay in hospital over the weekend and into next week. Nurse Andy is brushing up on his skills…. Before you ask, we will not be accepting any visitors for the duration. The risk is too high. Thanks for all of the cards, emails and texts, they have really cheered Christine up. 
Well, Christine is home! After a lot of umming and airing, it was determined, after sign offs from both teams, physical therapy, occupational therapy, and an Andy capability test, that Christine was fit enough to come home today. This was quite a shock as we were originally told that she would be in over the weekend.
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Although the surgeries were similar in nature there are a number of different problems to overcome. Christine is left side dominant, and with all of the surgeries this time on that side, maneuvering is proving to be difficult and frustrating. Also she has a suction pump machine to carry around, which also presents some issues. Oh, and the trach tube, I won't go into the details, but it is not much fun for her. I am sure we will figure out efficiencies over the coming days. At the end of the day, she is alive and kicking, so we are all very thankful for that.
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At chez Fryer we have battened down the hatches, only answering the door through the Ring App, and venturing out only when we have to. We have plentiful supplies, and are now hopefully locked away from the world. Needless to say, with all of the Covid-19 business going on, we will not be accepting any visitors. We will just have to have a virtual cup of tea together, and maintain that British, stiff upper lip! 
Christine has been home for four days now, and we are coping quite well. We have a nurse visiting us three days a week to change the dressing on her arm. My tasks have been recording discharge and cleaning out her four drains, keeping her airwaves clean, administering drugs and feeding, etc.. With the aid of her walker Christine has managed to walk around our pool and has even done some work on her sewing machine. She does get tired very quickly though, which is understandable.
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The wound on her thigh created the graft needed to patch up the wound on Christine's leg. The wound on Christine's leg, is where the bone was taken to recreate her jaw, and the skin and flesh to recreate the gum. The wound on her arm was used to recreate her cheek, and still has to have a graft added. All is healing well. Dr Garvey removed three drains, which I was delighted about. My joy was short-lived, when he told me that I would have to dress the leg wound on a daily basis. Apparently it is easy! Let's see in the morning! 
So, in essence, all is going according to plan. We are completely self isolating, using curbside pickup when necessary. The only real danger is visiting the hospital, strangely enough. Our next appointment is not until March 31st, when we see Dr. Garvey again, and then on April 2nd, when we will see Dr. Pytynia (she removed the tumor) for the first time after surgery. I will report soon after these appointments. Keep all the messages coming, as they really cheer Christine up. Thanks! 
Christine and I had to quarantine for fourteen days, so all of our appointments were put back by two weeks or so. It turned out that one of the care workers attending the ward that Christine was on had developed Covid-19 symptoms, so we had to self-isolate as a precaution. We didn't find this too difficult as we have been like this since Christine started chemotherapy back in December. We are extremely grateful to Kroger kerb-side, and all of our gofer friends.
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Today we finally got to see Dr. Garvey and Dr. Dhanani. They were very pleased how everything was healing. Dr Dhanani removed the final drain (down to two tubes now), and the staples that were holding the graft on Christine's lower leg. Dr Garvey removed the stitches inside Christine's mouth, the 75+ stitches in her cheek, and properly redressed the skin graft doner site, which is causing Christine so much pain. 
The problem now, with the hospital shutdown for non-essential surgeries, Christine will not be able to have the graft put on her arm until mid-May at the earliest. Unfortunately, this means she still has to lug around the wound vac machine, which is a bit of a pain in the backside. At least next week she will see Dr. Pytynia and should be able to have the trach tube removed. Next week she will also have a barium swallow test to confirm whether she can start eating through her mouth again. It seems radiation will be delayed to allowed all of the surgeries to heal for a bit longer. We are getting there, albeit slowly. I will report again next week, after the next follow up with Dr. Garvey. We hope that you and your families are all safe, and entertaining yourselves!
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It’s been a busy week for Christine and it’s still only Wednesday! On Monday and Tuesday, she had 5 doctors appointments and there were some issues to clarify. First of all, the hole on her cheek is an infection and not a new tumor. This was our biggest worry. It’s now being treated with antibiotics and wound care, so we hope for an improvement this week. The open wound on her arm is ready for a graft and the surgery date given to us was August 10th! Dr. Garvey said this was unacceptable and it’s now May 4. All other wounds (leg x 2) are healing nicely.
We met with the radiotherapy doctor, Dr. Chronowski, and we started the process of arranging radiotherapy, which will be 5 days a week for 6 weeks. When we start is yet to be decided as it all depends on how the infection heals. Thanks to COVID for all this uncertainty! That extra week when her appointments were put back created all kinds of problems! Also the tracheotomy tube is still in place until the infection shows some positive healing.
Christine had a swallow test on Tuesday and she passed, thankfully. This shows that the inside mouth surgery has healed and there are no leaks. That means she can go back onto proper food! Yay! Christine had tomato soup for dinner and it tasted SO good after 5 weeks being fed directly into my stomach via feeding tube. The feed tube will remain until after radiation is complete, just as a precaution. She will be on soft food/ liquids for a few days then she will progress slowly to more solid foods. She has plenty of lovely soups in the freezer, so she is looking forward eating those again (thanks, Michelle)
On the COVID front, we are both still totally isolating for the foreseeable future. We only go out to the hospital, which is like a ghost town! Thankfully MD Anderson only deal in cancer, so no COVID patients are there to infect us, although they are still taking every precaution to stay safe. We’re keeping busy and not getting bored. Changing dressings seems to take 1/2 the day and of course we have the lovely garden and pool to sit beside in the afternoons in perfect, beautiful weather. Couldn’t be better if we were in the Caribbean! Christine is able to walk around the pool with the aid of a walker, so she gets a bit of exercise, and Andy is swimming daily, although the water is still quite cool. So, life’s not all bad, in fact much better than a lot have in the present situation and we’re grateful for it.
Again, we must thank all the wonderful friends who keep sending messages of encouragement, even though we can’t meet, and all the lovely surprise FaceTime calls and emails from people far and wide! We’re doing OK and a lot of that is due to you. Thank you. ❤️❤️
Of course, if you no longer wish to receive these updates please let us know and we’ll take you off the list.
Just a quick update with Christine's progress. In the last couple of weeks, quite a lot has happened. Christine has finally had her tracheostomy tube removed. It was originally planned for Andy to remove the tube at home via a video link with the surgeon. Although he felt confident, we ultimately decided to wait a few more days to have it removed at the hospital. Having now seen the process, it was very straightforward!
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Yay! No more dragging it around 24/7, so I'm not tied to the walker anymore! Free at last! This means that I should be able to drive myself to some of my radiation appointments…. in my own car! (the walker won't fit into the back of the 'vette). I will have to practice driving as I haven't really done any for six months - I hope I remember how!
So, on to Phase Three. Six weeks of radiation begin on Monday; 5 days a week for 15 minutes each afternoon. Thankfully, that will be at our local satellite facility, just 20 minutes away. A quick daily trip and then back into isolation, until Texans get some sense, and this whole Covid-19 thing gets better. Fortunately, MD Anderson is a dedicated cancer hospital and has no Covid-19 patients, and a very strict entry procedure, so it is a safe place to be.
As there will be not much more to report, this will probably be the last blog until after radiation finishes in mid June.
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So what's next, I hear you ask?
Christine is still feeling some discomfort from the radiation, particularly on her tongue, but this is improving daily. Rather than use her feeding tube, she has started to eat proper food, and although it is liquidized, it is a step in the right direction. Hopefully the feeding tube can be removed in a couple of weeks or so. We are seeing and ENT specialist next week to figure out how to stop the ringing in Christine's ears, which is a side effect from the chemotherapy. After this, in September, we have to go back to Dr. Garvey, to start the reconstruction of her face. This will involve liposuction, and some resculpturing to get her face looking how is was before all of this started. Once this has been done, we then have to go to the dental department for Christine to have new teeth inserted. In addition, for the next year, we have to have CT scans every three months to make sure that there are no more recurrences.
Hopefully, by then, the Covid-19 vaccine will be ready, so that we can go and have a good holiday!
Thanks again to everyone who has shown such support and kindness to us. We are indebted to your friendship.
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On the social side, like everyone else who has some sense of the seriousness of Covid-19, we are keeping to a small bubble of like-minded friends. We do try to have a day out once a week, and now that the hospital appointments have dwindled, and the weather is cooler, these trips have become a welcome distraction.
Once again, thanks for all of your support, and stay safe! Our next update will be after the next CT scan in the new year.
We had some great news today. Christine’s latest three monthly scan came back clear of cancer. Also she is getting her first COVID vaccine in a couple of days, and hopefully there will be some progress with her prosthetic teeth next week (although the dental department so far has been rather underwhelming). After this, in late March, she will be having a day procedure to re-sculpture her face. This will involve some liposuction and some tidying up of the scars under her chin. This will be performed by the mercurial Dr. Garvey. Seems he will do anything for cookies…
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Stay safe!
It seems we are hopefully at the end of this long journey of recovery. Dr. Garvey took up the knife again at the end of March and sucked out the excess tissue under my chin and with additional massage, it’s looking much more normal. I expect it to get even better with time. I also ended a long, administrative battle with dental, culminating in some rather wonderful teeth.
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None of this could have been possible without the skill, confidence and encouragement from my entire medical team at MD Anderson, to whom I owe my life. They have a very aggressive approach and work on the cutting edge of medicine but it worked for me and I am considered something of a walking miracle. Also to CIGNA health insurance who footed the bill! It adds up to around $750K in all so if you’re in UK using the NHS, be grateful it costs you nothing! And let's not forget Andy who has been through hell with me, by my side and held me up the entire way. My rock. Thanks also for the encouragement and support of some very special friends who never wavered and made life “normal” through the tough days.
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