CHEMO 2 DAY
I arrived at the hospital at 0820 and gave blood then saw the doctor at 1000. She detailed the meeting yesterday with the lymphoma specialist, the haematologists and oncologists. The biopsy specimens had been too small and not of sufficient quality to allow a decision as to whether my lymphoma was DLBC (diffuse large B-cell) or follicular. They had not been able to decide. So, she said if looking at statistics, etc., to look at both and take a middle line. I was due to have another enteroscopy in a few weeks so asked if they could biopsy any remaining tumour but she said it would probably be too messed up to sample. The treatment they started me on was for the more aggressive diffuse large B-cell because the treatment for follicular would not have been suitable for DLBA and if it was DLBC it needed fast treatment which would be ok for the follicular also.
The difference I would have made, had I known to suggest this, would have been to do a new enteroscopy when they first saw the dichotomy, biopsy it again in the days while I waited for chemotherapy to start this might have yielded better samples for grading.
So, it was to be a waiting game. DLBC can be "cured" (as in can be in remission for 10 or more years) while the follicular always returns with a median time of 3-4 years to first relapse. She said this is a median of all stages and mine is a 2 so I should be on the good side added to which my blood was excellent and general health also. My condition had been found before my health deteriorated which also would help to put me to the top of the survival rates.
Following this meeting I began my second chemo. Mine is a long regimen and the nurses apologised for not starting sooner (due to staff shortages). It took just 4 hours this time and I got my PIC dressing changed at the end. I became mildly nauseated in the evening. I collected my bag of take home medications from the pharmacy and Steve drove me home.
Sat 3rd May ’08:
I felt mildly nauseated and took 2 anti-nausea pills which helped. At 1300 I gave myself an injection, Neulasta, the one to boost white cells. It didn't hurt at all and was very easy to do.
Sun 4th May ‘08:
I was up every 2 hours through night to the loo and was nauseous and could not sleep. I had gastric reflux and nothing to fix it with. My weight was 55kgs which is 2 kg more than before I went into hospital.
My nose had started to run big time and my eyes were watering constantly - I thought I might be allergic to something here in the neighbourhood, some plants or something. It became a major problem as I would have to blow my running nose every few minutes and wipe my eyes so that I could see without blurred vision.
One major thing began to happen – my hair began to come out I clumps!! I knew this would happen but…. I then fully realised that I was going to be bald soon.
Mon 5th May ‘08:
I spent some time getting up the courage and finally lifted the scissors. I cut off my lovely hair, leaving maybe 2 inches approximately all over. I am no hair stylist so my haircut looked awful, but, who cared?
Thu 8th May ‘08:
I felt bad today but I could taste tomato with feta and Miracle Whip. Most things tasted horrible. I completely forgot my lymphoma clinic appointment and the hospital phoned me about it- silly of me but I am too spaced out to remember everything. I am trying to think and act as if through a fog and I make mistakes and get things wrong.
Fri 9th May ‘08:
I felt very tired again today and had tumour pain most of today but mild, the usual 1sec pains every 8 - 10 secs. This got worse in evening so I took an endone and slept.
Sat 10th May ‘08:
I should be neutropaenic today. I was 52 kgs this morning, the lightest I have ever been (normally 53). I think I am eating normally but perhaps am not metabolising all my food due to the changeover from TPN.
Tue 13th May ‘08:
Woke at 0430 with tumour pain, more or less constant but not too strong but enough to prevent me getting back to sleep. I also found a painful diffuse lump on the inside of right forearm. By early evening I had strong pains in my guts. I also noted that the odd powdery mouth feeling was less.
Thu 15th May ’08:
Thursdays are lymphoma clinic days. The area of my tumour gives a sting of pain every so often. The lump in arm has condensed to smaller painful one. PA Hospital phoned with a date for my next enteroscopy - 28th May. At the clinic the doctor said the lump in my arm may be a blood clot and may need ultrasound scanned. She also said that the lymph nodes had not been apparent on the CT scan I had in PA on 14th April….!! So that seemed to indicate that they had regressed of their own accord before any treatment, although it was more likely that they were there but didn’t happen to be noticeable on that scan.
Fri 16th May ‘08:
My session started at 1100. My PICC was dressed and the chemo started at 1130, finished at 1500 and Steve drove me home. By 2000 I was nauseated.
Sat 17th May ‘08:
I felt terrible, just totally ill and sick all day. My eyes and nose were still running constantly……..it was a real problem. My hair had almost all come out but I had a thin covering left although you could see my shining scalp easily so I started wearing a hat.
Fri 23rd May 08’: I was coughing and was very tired and had to go to PA for a PICC dressing change. I was dizzy on standing up. Back home I fell due to dizziness then had to lie down a fair bit.
Sat 24th May ‘08:
I had very tired aching muscles, backache, some tumour "pain", i.e., I can feel something there, and I was dizzy.
Sun 25th May ‘08:
I did not take my diuretics and felt much better! Then I took one diuretic (frusemide) at 3pm and still felt ok. I think the other one (spironolactone) was responsible for the nausea I had been feeling. I went for a walk and uphill had a real struggle - like walking through mud, dragging my aching limbs. I had never felt like this before.
Tue 27th May ‘08:
I still had sparse hairs and incredibly they were still growing in length! I also had pubes and leg hair growing. I noted that I still had a fair bit of dull aching in the tumour area.
Wed 28th May 08:
Today I was fasting from 0700 for my push enteroscopy at 1250. They did not have an enteroscope so had to use a paediatric colonoscope.
Thu 29th May ‘08:
I had a CT scan today then the normal lymphoma clinic at which I saw a photo from yesterday's enteroscopy - amazing!! Just clean gut wall with heavy scarring and a couple of "nodes" like bumps. Bloods all good - just more anaemic than I was before any chemo started. He is allowing me back to my home 230km away after 4th chemo (tomorrow) so I will go home on Sat. I am totally thrilled by this!!!!!!!
I will travel to PA for the last 2 chemos and will have to be here the day before each for my blood test. The Leukaemia Foundation will arrange and pay for accommodation for those nights. My PICC dressing which has to be done weekly, will be done at a local hospital.
Fri 30th May ’08:
I had my fourth chemo 4 which took all day from 0900 to 1550.
Sat 31st May ‘08:
I went home today!! We left at 1400 and got home at 1730. I gave myself my Neulasta injection.
Thu 5th June ’08:
I went to a local hospital for my PICC dressing. I was really too ill to have gone myself as I found I could hardly walk and was shaky at the best of moments. I felt like this every day…
Sat 7th June ’08:
The Neulasta bone pain started and with it the spine-ache and gut-ache. I hated the effects of this stuff but appreciated its necessity and its power to boost my white cells.
Thu 12th June ‘08:
I went to Brisbane for the blood tests, consultation at the lymphoma clinic then chemo tomorrow. I drove two thirds of the way but by then my arms were so aching and I felt so ill that I had to stop. Steve took over.
My blood results showed that my HG (haemoglobin) was down to 86 (which is about 55%of normal) so I was to get 2 units of blood for tomorrow with my chemo. Then it was arranged that I would have another enteroscopy and CT and PET scans around 10th July after the 6th and last chemo. At last CT, I had one lymph node still enlarged 15X9mm and >10 is abnormal, so this needs to be checked.
Again I found walking difficult like going through mud and I now know that this was due to low HG.
Fri 13th June ‘08: I had the chemo, PICC dressing done, blood transfusion………!! An all day affair. I was EIGHT hours in the chemo chair……the last person out of the chemo unit and then we drove back home through the rush hour and got there late that night.
I felt GREAT and was able to run up steps!! I gave myself my Neulasta injection.
Mon 16th June ‘08:
Still felt great, just some backache in eve.
Tue 17th June ‘08:
My face was fluid-puffed and later I had rather distended sore guts and backache.
The remaining chemos were the same except for chemo 6 when it was assessed that I had suffered enough nerve damage to my hands and arms (tingling fingers, toes, tongue and no arm reflexes even) so the vincristine was left out this time.
My eyes and nose continued to run constantly – still had to mop my eyes so I could see without blurring.
Chemo 4 - I still had hair. It had thinned but not all come out. Pity I cut it!
Chemo 5 – I still had hair same as before and what I had was growing in length – I had to cut my sparse fringe. I still had full eyebrows, eyelashes and pubes and other body hair.
27th June ’08:
I had my 6th and last chemo. I still had hair. eyebrows, lashes etc.
My eyes and nose continued to run constantly and I still had to mop my eyes so I could see without blurring.
6th July ’08:
Having been in the sun, I had huge freckles on my face, much more than I had ever had before!! I had also lost skin thickness and support, particularly around my mouth and I began looking really old so I started thinking about having cosmetic Aquamid injections (filler) later on.
10th July ’08:
I went to Brisbane for more follow up tests. I had a push enteroscopy in PA on 10th which failed (they used too short a scope) so I was scheduled to have one next week again.
Fri 11th July 08:
I had a PET scan in RBH and then CT scan in PA. I was exhausted and sore inside from yesterday’s enteroscopy.
Sat 12th July ’08:
I was a little nauseous and tired. Bad backache and hips………must do an exercise programme now. Hair growing ok (at least I imagined it was).
Tue 15th July ‘08:
I took photos of my hair and compared with 05/07/08. There were no noticeable differences except less eyelashes and brows and maybe less longer hair also on top. My eyes were still very puffy with dark shadows and watering constantly. I was feeling a good bit better though and started doing some exercises on my verandah.
Thu 17th July ‘08:
I went to Brisbane, PA Hospital again for a blood test and the lymphoma clinic and saw the consultant. My Hg was down to 90 again so he wrote me up for 2 units of blood on 29th. So on 29th I was to have a blood test at 0745, theatre for push enteroscopy 0800, blood transfusion at noon, and also a BMD (bone mineral density) scan at 1530. The BMD scan was for the research project in which I was taking part.
Mon 21st July ‘08:
Three weeks post my last chemo, my eyelashes and brows were coming out and looking sparse!! And no signs of hair growing in between the strands on my head that never came out. I was worried! But I was feeling quite good except tired. My mouth felt its best since the start of chemo. I was 54kgs so had put on 1 kg over the whole thing.
22nd - 28th July ’08:
My eyelashes and brows continued to come out, maybe 4-6 hairs per day from each.
My head hair was coming out if I pulled a section gently, maybe 8 hairs.
Still had pain in region of tumour.
Had very dark circles under eyes.
Eyelids and below eyes swollen and puffy.
Eyes still water incessantly which makes vision blurred, etc.
Nose runs constantly.
29th July ‘08:
I went again to PA hospital. This was almost five weeks post chemo and my blood test showed that my HG had risen to 108 (from90 on 17th) of its own accord so I didn’t need the blood transfusion. I had the push enteroscopy which showed a bump on jejunum wall and they biopsied it.
Worried!!!!
1st Aug ’08:
I phoned for results:
I was told "All Good". I couldn’t believe it really so I asked the doctor to check the date of the enteroscopy and he confirmed that the 29th biopsy on the 29th was ALL GOOD…………….WOW!!
I still had pain in jejunum though - maybe due to biopsy.
2nd August 08:
I noticed that my scalp was looking bumpy all over, small bumps which I believed could be hair follicles doing something! I also have pain on the top of my scalp if I touched it or rubbed it.
4th August ‘08:
Eyelashes and brows almost all gone but had NEW ONES GROWING. No hair on top growing at all but the remains of my original hair was coming out!
6th August ‘08:
Lashes and brows were growing fast!!
7th August ‘08:
Lashes and brows were coming on great and I had a few short darker hairs visible up top front left….but that's all!!!!! Worried about hair!
9th August ‘08:
I examined scalp in detail against the light and found that I had almost transparent peach fuzz all over top but nil on sides and of course I cannot see back. THIS WAS A BREAKTHROUGH, SIX WEEKS POST LAST CHEMO. I was still plagued by watering eyes and runny nose……..!! I could still feel a feeling at tumour site but not really pain.
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