Sunday, 28 December 2008

Life goes on

Firstly, I realise I'm a bit late, but I would like to wish all my blog readers all the best for the festive season and a prosperous and happy 2009.

For the time being I'm regarding myself as sarcoma free until the medical profession tells me otherwise. The only effects on my daily existence, from what I've been through, are a great deal of fatigue, and the messy ulcer on my backside, which takes a lot of work keeping clean. I do have other health issues which I will follow through with GP's etc. , one of which may transpire to be sarcoma when investigated. I hope not!

I had a quiet Christmas at home. A trip across to Victoria Point for last minute shopping on Christmas eve left me very fatigued with a very tight chest on top of everything else. I did manage to catch up with my relatives on the phone and thank them for their presents. Hopefully I'll have a bit more energy after new year.

Anyway life goes on and I'm not planning on wasting too much time and have started working on my hobbies again. 3D Modeling is certainly worth keeping up as it may help with future income or at least supplement such. It is relaxing though a bit sedentary.

The weather here is very hot at the moment and this region, South East Queensland, certainly has had a very active storm season. I'm longing for cooler less stressful weather. Last night it was 24C° (75.2°F) at midnight + humidity. It was 2:00AM before I would have fallen asleep. I slept in until 10:00AM today (Sunday) LOL.

Anyway I'm hoping for a sarcoma free year in 2009, and no more surgery I hope.



Friday, 19 December 2008

Good News - Margins Clear

I went along to hospital today for my post discharge outpatient appointment. The good news that the margins of the resected tumour were clear. This means that they likely have removed all the sarcoma with none left behind. Most of the resected tumour comprised of dead tissue which indicates that radio therapy was successful. I was given a copy of the pathology report and surprised to read that the resected tumour was 150x100x100 mm ie 15cm x 10cm x 10cm.... whew some size!!

The tissue on my backside has collapsed somewhat and there's a bit of an ulcer which I am told will take about 3 months to heal. In the meantime I've got to put up with a bit of a discharge until it does heal. This doctor did not restrict me in terms of activities unlike other doctors. The registrar in the ward did not want me to sit until the discharge had stopped. Todays doctor did the same last year ie told me all was ok when the others considered the wound was infected. All the others had me on antibiotics due to the wound being indurated.

The bad news is that the doctors are expecting sarcoma to re-occur in the future. My next outpatients review is in April. There are three chronic disease hotspots currently on the go, which I've mentioned ad nauseum to doctors. They either ignore or dismiss out of hand. Though I would have had a lymph node biopsy were it not for the sarcoma developing in May. The tumour just removed, was initially dismissed out of hand by a GP and the ortho oncology surgeon in charge of my case as unlikely in April & May of this year. Neither of them could initially feel the mass. However the MRI proved that a lesion was present. My groin/crotch/genitals area on the right side tells me that some disease process is ongoing and not cleared by the Sarcoma resection. Likewise my right neck and right ribs breast area. I'll post more on this subject on my sarcoma insights blog.



Saturday, 13 December 2008

Home From Hospital

I'm home at last from hospital after being there for three weeks following surgery to resect the sarcoma. It feels great to be home indeed! Hospital generally went well. The nursing care was excellent. Hospital food was ok to great, though there were a couple of naff meals and of course nausea and the occasional fever tended to put one of one's food from time to time. I enjoy sleeping in my own bed and the less regimented existence.

On the medical side there were a few surprises. I woke up in ICU after the operation. This was due to concern that I might have a heart attack, which the doctors thought may have been a possibility. I was told that the stress echo cardiogram revealed some ischemic damage. Given that I've had an abnormal ECG since December 2000 and that I had a possible cardiac event at that time, and I was deemed to be free of ischemic damage following a stress test in August of that year, the damage probably occurred then.

It was amusing when I started to come to in ICU. Things were a wee bit weird at first. I had a somewhat vivid dream that I had been offered a contract by a leading flight sim publisher at the same time I was beginning to surface and began to struggle with the respirator tube going down my neck. Somehow my sub conscious mind translated this as haggling over contract details with publisher's represenative. Some of the medication they give you during and after surgery does give one very vivid dreams. When I eventually came to and realised where I was I was greeted by a very Irish nurse, full of cheek and blarney, and quite re-assuring. BTW I hope the dream comes true. I do hope to be available for contracts once I recover, both in my normal day gig and 3d modeling.

On the medical front news was broken to me that the doctors had encountered some surprises during the operation. The tumour was very large and had also attached itself to the bowel and the urethra at the base of the penis. This meant a small part of my bowel had to be removed and the rectum was nicked too. This was one of the reasons I was in hospital so long. The doctors had to be sure that the rectum was robust enough for normal usage and that I remained free of infection as the wound is right next to the back passage. I was told the sarcoma itself was quite large, about the size of a small rock melon.

On the bad news front the ortho oncology surgeon thinks sarcoma is likely to re-occur as it is metastatic, and he possibly did not get it all. He told me I may have further radio therapy. If it does re-occur he has to weigh up between a collostomy and treating me with trabectedin/yondelis. I would certainly question why a collostomy as he would be removing part of the bowel as a precaution. People have survived much worse than I have without resorting to such radical methods. Given overlapping urology symptoms, swelling and adenopathy, if all are sarcoma related I've had sarcoma for a long time and it's already spread to where ever it's going to spread to.... probably small benign looking conditions that suddenly decide grow. I tend to think that radiotherapy or antibiotics in February, provided the trigger and the signal to cause sudden rapid growth of the sarcoma between March and August. Something triggered growth during February/March anyway. I'll post more on my speculations and medical history in my other blog Sarcoma Insight when I'm able to sit a bit more.

Right now I have normal mobility and generally feel ok. I do wake up with body wide aches and pains and have a temperature at times. I have to avoid sitting upright for prolonged periods. I'm not sure how long for. I've known people who've had surgery for urology probloms being told to avoid sitting for long periods for 3 months following surgery. The wound was fairly massive, a 10cm hole takes a lot of healing and filling. My backside is shrinking and changing shape on a daily basis. I've written this small peices at a time, taking frequent breaks and access the internet througout the day from my notebook lying on my side, though it does get rather tiring typing like that. In the meantime I'm enjoying reading a few books and delving into my cd collection.

Many thanks to those who've sent me their best wishes or offered their prayers. I'm quite moved and very encouraged by them. I've still a couple of people to reply to and will do so in the next few days.

thanks and best wishes


Saturday, 15 November 2008

Surgery looms

Surgery is now only 3 days away...really two actually. My pre-admission session was on Wednesday. It comprised the usual briefing and check over by a nurse, doctor, pharmacist and anaesthetist.

The anaesthetist was concerned that my ECG was showing as abnormal and had been for quite a few years going on my chart. There also had been inconsistency with chest x-ray reports which report normal left ventricle size and some which correctly report ventricular hypertrophy. I also was told during my admission last year that I had suffered ischemic cardiac damage during that admission. As anaesthetists don't like operating without knowing what's happening inside a person an echocardiogram was hastily organised. As the hospital itself couldn't organise an echocardiogram before surgery next Tuesday I was checked out by a Qld University Research group looking to identify at risk (of a heart attack) patients who are having surgery. The test I was subjected to involved injection of a chemical similar to adrenalin and also atropine to increase heart rate to the point of stress. Laid back Rob's heart was unfortunately rather reluctant to stress out and beat at a fast rate. The target rate was 138 I did reach 136 when I experienced pain and the test was stopped.

I have had a few episodes of pain primarily under the left shoulder blade combined with an unusual sensation in the top left chest. The unusual sensation is similar to mild heart burn with a sensation of pressure. I sometimes experience a painful shoulder and hand. Yesterday's test proved that the pain is real and is cardiac. At the end of the test the heart burn sensation was quite fiery and the left shoulder, left arm pit, side of chest and hand were painful too. Fortunately it did not last long. Hopefully I'll find out how I faired after surgery.

Today saw one of my rare forays to the mainland with my car via the barge. I should do it more often but it's expensive. I've been busy shopping and catching up with housework so I'll be able to cope with the aftermath of surgery.

I hope to blog again before surgery.



Monday, 10 November 2008

New Blog

I am in the process of creating a new blog called Sarcoma Insight. That blog will focus on my personal insights as a lay person and sufferer of myxiod liposarcoma and will also look other health issues such as diabetes and infection. I have had a significant medical history most of this decade culminating in these two sarcomas. I am hoping that some of my experiences and insights may help others understand and research this dreadful disease. I also hope to translate relevant medical issues to a form that other lay persons such as myself can easily understand. These articles won't be of wiki standard however. I'll also post a link here on occasion when I write an article.

This blog, Rob's Cancer Journey, will continue to document my ongoing, and hopeful survival of this illness.

Surgery soon.....Very mixed feelings

It's been a while since I last updated this blog. Generally I am feeling good apart from a bit of pain & discomfort sitting and of course I still have a bit of a legacy following the resection of my previous sarcoma. There's a little bit of uncertainty as to one's future and infections are very much trying to get me at the moment.

I call the respiratory infection that frequently crops up my 'resident bug' as it follows a similar pattern and symptoms every time. It has occured many times over the last four years, usually when I've been fatigued or overdoing things e.g 18 hour days 3D modeling, several days at a time. (This was mainly in 2005/06. There has been no danger of that happening in the last 18 months). I usually recognise the onset of symptoms and rest before it gets a hold on me.

However radio therapy, it's side affects such as fatigue, and the cancer have weakened me somewhat and I am very succeptable to infection. I appear to have a permament low grade infection in my upper chest (possibly lungs - I can't feel them). The infection starts in my chest and works it way up to my throat and nasal passages, the opposite of normal infections. Likewise symptoms of Kidney/UTI occur in conjunction usually on the left side, and work their way down. Eventually affecting the groin and area of sarcoma. I tend to think it's some sort of opportunistic bacterial infection that diabetics are succeptable to, such as psuedomonas, which I have had in the past. Bottom line is I'm improving on a daily basis and just have to remember to rest.

Right now as I write this I feel very good!!

Radiation therapy also affected bowel function.... bringing new meaning to the phrase "...the runs".... very little warning indeed, causing a bit of extra laundry LOL. Thankfully I was at home when these things happened. Such as life with cancer. Hopefully that's over for now.

What's been happening......? Actually quite a lot. The radiation therapy still appears to be working. The tumour appears to be still shrinking and softening day by day. It's a bit sore but not too bad. It's massively itchy for some reason. The cancer has been re-staged by scans including MRI, CT and PET. The ortho oncologist told that I appear to be clear of other tumours. Which really should be good news but possibly not, given the situation I mention below.

I have to say I'm never 100% convinced, given my medical history, other symptoms and that the current sarcoma remained undetected despite scans last year. Conditions such as collapsed lungs have been initially missed on chest CT scans in the past. I was shown the MRI which was very sharp as to detail. The tumour is very smooth and round and still a wee bit larger than I would like given that it is now going to be excised. I have no qualms about the MRI scan as long as it has been closely scruntinised for other tiny spots.

PET scans however, depend on the uptake of glucose by cancer cells and can easily be affected by a number of factors. I've noticed other patients being given valium injections to relax their muscles to improve the resolution of the scan. Even mild exercise prior to the scan can affect resolution as can exercise or exertion the previous day. I only had 2 hours sleep the night before scan. Whether that would affect glucose metabolism and scan resolution I do not know. The whole scan process appeared a bit rushed compared the previous one. The main reason for my doubts was that I was told the previous PET scan back in May/June was very clear and showed multiple hot spots but they weren't going to worry about the others other than buttock for the time being. These spots have somewhow vanished!!??

The reasons for these concerns are that prior to restaging the doctors told me that if I had spots anywhere other than the buttock I would be treated with Yondelis rather than going straight to surgery. Yondelis has yet to be approved in Australia and is only allowed to be administered on compassionate grounds, if the sarcoma has metastized or inoperable. Given it's proximity to the anus, being close to the skin, and the possible consequences of surgery it is almost borderline as to whether it would qualify for compassionate grounds possibly even without spread. Anyway Yondelis is not to be for the time being and surgery it is.

The date for surgery has been set for November 18. I have yet to be told how the surgery will likely affect me or how long I will be in hospital. I guess it depends on how surgery goes and what they find and have to do. Given that I only had 15 radiation treatments and normally this type of sarcoma usually has 25 at that hospital, I was hoping that they could reduce the tumour further given that there is a bit of radiation leeway. However that is not an option according to the surgeon. The radio-onclogist had been hoping to shrink it to a size that would not leave much of a scar. Whether he was further consulted I do not know. The ortho oncology surgeon has the attitude that it has to come out regardless and that is that! .... and no point in waiting. One has to go along with it:(

I guess my attitude is - I think the process causing sarcoma has spread already (my right neck and breast are very dodgy and also possibly left lung). I was right about this last time with the emergence of the groin/buttock sarcoma. Why be crippled by surgery and go through this all again when a little bit more perseverence, double checking and consideration could possible produce a different outcome.

Interestingly I was made to sign a surgery consent form in ortho-onclogy outpatients the other day which is unusual. This usually occurs in pre-admission and sometimes even on the day of surgery.

Everything is being rushed just that little bit too much.

The surgeon told me that I would be in hospital between four days and a week then qualified by saying '..about the same as last time." Last time I was in hospital for 3 weeks followed by 3 months recovery and rehab. Everything is so vague and non commital and makes it very hard to plan.

Hopefully another aspect of 'last time' won't be repeated as I suffered ischemic cardiac damage during admission and a partially collapsed lung. It was only due to the plastic surgeons doing their rounds the following morning and insisting that I be checked out that these were detected, some 24 hours after the event. The staff of the orthopedic ward didn't initially bother report or check me out when the collapse occured. Hopefully things go better this time especially in the area of communication and follow through. Memories of last year returning .... mmmm ....LOL

Hopefully all will go well and my pessimism is unfounded.



Monday, 20 October 2008

The Battle Continues

I certainly was correct in using sarcomabattle as the subdomain title of this blog, and last week certainly lived up to the title. I haven't been so persistently ill, physically drained and depressed as I was last week. I've had my share of illness in the past including a period of severe fevered ilnesses earlier this decade, but nothing as persistently oppressive as last week.

It was most likely a consequence of radio therapy. Fatigue, depression, pain and malaise are known possible side effects of radio therapy. Since radio therapy finished at the end of September I've been finding I have much less 'gas in the tank' as I usually have, with intense fatigue arising at some time during the day, occuring anytime from 10:00 AM onwards. Sometimes this manifests itself as intense yawning drowsiness and other times my chest is absolutely heaving and straining with fatigue and I have to drop what I'm doing and lie down to avoid a heart attack. This type of fatigue can occur very suddenly without any warning, which I find very alarming. These affects combine with diabetes and infection which always seems to be around in low grade and at times not so low grade forms. I've also had many diabetic 'hypos' (low glucose) in recent weeks which also strain one's body. I've had to reduce some of my diabteic medication as a result. One cannot forget all the pain either - incessant at times which greatly adds to any fatigue or oppression. I experienced similar fatigue episodes from February to April following a radiation booster for the previous Sarcoma in February.

This particular sarcoma, on my backside, has been painful for many months as I've written in earlier blog posts. Radiation therapy causes inflamation and tissue burning in itself, adding to any pain caused by disease. I had fifteen treatments of radio therapy this time around. After a few days matters became quite painful and I was prescribed Endone which was later upgraded to a combination of Ocycontin and Endone both of which finished last week. Withdrawal effects from this medication could have contributed to last week's events too. Fortunately pain levels have greatly subsided to be at minor annoyance level most of the time with occasional inflammatory flare ups. I take Panamax for the inflammation and have no desire to return to the heavy duty pain killers at this time. Radio therapy treatments were also punctuated by a break due to the effect on my skin. I had two weeks off in September. Hence treatment did not finish until 30 September.

For many years I also have experienced a recurring respiritory infection with identical progression and symptoms, usually when my body is at a low ebb due to other factors, such as other infections, overdoing things, not getting enough rest etc. This also reared its ugly head in the last couple of weeks. I tend to think it is some opportunistic bacterial infection such as psuedomonas due to the similarity of symptoms. I have had a severe psuedomonas infection in the past, which was never treated with the correct antibiotics, as the doctor at that time did not want me to go to hospital. As I've learned since that diabetics are particularly prone to psuedomonas infections and I can recall reading that pseudomonas is the most common cause of pneumonia in diabetics and that pneumonia is the most common cause of death in diabetics (pneumonia was in my father's case). Thus I would say that pseudomonas can be deadly to diabetes sufferers. Very few doctors that I have encountered are aware of this. They should be. I hope to blog further on pseudomonas in a seperate post.... just for interests sake.... (hypochondria or what? LOL).

In previous posts I've made mention of my belief that there is a strong element of infection involved in the development of these sarcomas. I have had continual problems in my right neck and chest and also left kidney for a number of years. Will these be the next spots for a sarcoma to develop? Doctors had been observing elusive lumps, tissue hardness and a fatty growth in the right thigh/groin/crotch/buttock for many years, which appeared be associated with earlier septic UTIs, yet last year couldn't see anything amiss until the latest Sarcoma started growing. The orthopedic oncology surgeon who was in charge of my case could not believe it when the current sarcoma was detected this year. He told me when this occurs it is usually a seperate occurance rather than a spread and it then keeps occuring until the person dies, usually a few years down the track. I tend to think that going on my past medical history the basis of these sarcomas formed and spread many years ago, becoming aggressive in the past two years. Again I hope to write more on these possibilities in a future blog post.

Returning to the battle - Last year I learned a new trick when after 2 months of persistent chest infection matters were climaxed by a winter flu bug and fevers. My temperature reached 39.5° C, and having been caught out in the past with fevers which exceeded 41° C, started to give contemplation to calling the ambulance, given my prior medical history and also the sarcoma. I took two panadol and rather than lie in bed and endure the fever, forced myself to get up out of bed and started to tidy the house and do some vacuuming just in case matters got worse. (I'd hate to end up in hospital and leave an untidy house LOL.) Anyway 1/2 hour later my temperature dropped to 37.2°C and I felt not too bad. The fever and immune system reaction caused by that flu also rid me of the persistent chest infection. Last week given the oppression of my symptoms I realised I would be in trouble if I didn't fight them. Thus on Thursday with only two hours sleep and despite the massive fatigue and occasional fever I spent a few hours working on the yard and general tidy up. I had to pace myself and punctuate with breaks, but we got there in the end. By Saturday I had largely recovered, though I have to be wary of sudden fatigue and still have the persistently runny nose that I've had for a number of weeks.

To survive all this is very much a matter of balance between activity and rest. Make sure one gets the appropriate rest and to force oneself into activity if one senses oneself succumbing to oppressive symptoms, provided one is able to of course. Also I'm finding it important not to spend to much time on any one activity and to consistantly vary activities. I've just about used up my sitting on bum at a computer time for the day and it's still only morning.... a brief rest, then some reading, music and house work..... fun times eh?? LOL.

It was difficult to see a doctor last week given that one has to make an appointment ahead of time and one was too ill to do much travelling. I did have to attend Ortho Oncology outpatients on Friday, but they didn't even ask how I was.... just arranged a scan and an appointment for next Friday. They are veering from their earlier announced plans..... more confusion and frustration.... the medical profession... !!!!. Ever heard the expression like herding cats? .......Yet another future post on my current medical encounters & frustrations.

Of course all this has put a dent in my computer based hobbies such as 3D modeling, though I did manage to squeeze in a bit of work yesterday on the Sopwith Snipe for Flight Simulator X. I had put it aside for a couple of weeks. I've alsdo dropped notions of Fokkers for a few weeks at least LOL. I still hope to be able to release the Snipe prior to surgery though it may not be as complete as I would like.... That depends on the medical plans and how I am likely to end up after surgery. If a quick recovery is likely then I may leave the Snipe and finish it more completely after surgery.

Time for a break and then on with the day....