Midweek musings

I had a good doctor visit. As I mentioned my numbers are going up (kappa light chains) but as he said it is slowly going up and I’m a long way to where I started out 3 1/2 years ago at 1010 mg/L kappa light chains. So I’m not ok and not panicking. I went up 6 points to 31.7 so an increase. Lambda is in the normal range and looking back at my numbers, Lambda was always in the normal range. The ratio also increased to 2.66 from 2.33 so increase there too. When I went back to when I started Velcade my ratio at it’s highest was 68.25 mg/L so that says something about where I started.

All in all, I’m ok with for now. It’s always weird to think cancer cells are in your body but one must be positive and philosophical at the same time.

We’re in for cooler temperatures which will be most welcome.

My daughter is drying some cherry tomatoes since we have so many and I really don’t want them to waste. Sundried tomatoes in the winter are nice additions to pasta.

Our last appt is Friday till next week. Driving to Sacramento has been awful with the traffic. Driving home has been a lot easier. I’m guessing with school starting and work there are more people on the freeway.

After next week, we are on the every 2-week clinic schedule and that will be very nice.

 

Gratitude

Do you ever notice how I seem to be chasing the sun? I mean, I spend a lot of time documenting the rise and the fall to the earth of the sun and I am fascinated by all the colors painted each and every time? We realize it is a ball of fire and it could destroy the earth someday right? Do I ever think of it that way? No, I think…. oooohhh it is sooooo pretty, let me get closer. I am seriously fascinated with the view from my back window, it feels like a living painting and I do not have to pay for the luxury, it just came with the house that the government helps me pay for. I mention this statement because, up until maybe two months ago, I did not properly appreciate my old, drafty home or the view. I think my intention with the photography idealization is to visualize what my life would look like if I lived in the large homes that are bordering my neighborhood. I neglected the appreciation of my own house and did not daily remind myself as I should have, of how fortunate I am to live on such a quiet street, with such great neighbors. I never thought to appreciate the proximity of small town community kindness and the bigger city experience close enough, how it is just perfect for me and my family. This is something I now remember every day that I live, until such a day that I am granted a larger living space that matches my dreams.

I am grateful for every hardship or every darkness experienced which make me appreciate the moments of light more. I am grateful for still being alive, and for learning the lessons I have learned through learning to love myself. I appreciate the clarity of mind to be able to look back on past life choices and see the reasons, or learn the lessons, and possess the ability to make changes necessary to move forward without regret. I am grateful for the health of my children, and for the fact that Cancer listens to me when I tell it that it is not welcome in my body or my mind. I am grateful for the ability to see the answers to whatever questions I have and not to have the fear and doubt cloud my judgement. I am thankful to God for removing Fear from my entire being.

This earth is so small in comparison to the rest of the universe, and sometimes I am especially grateful for recognizing how insignificant I am, yet how amazing it feels to have the ability to get up every morning and try something new again and feel limitless in my potential to change each day anyway. Not everyone has the rights or abilities I have; it would be a shame if I wasted my chances to keep chasing that sun.

Life outside of Treatment

I’ve been a bit quiet on here the last week, largely for two reasons. We’ve been dealing with my dad after his fall last month, and also, there’s been little change or reason to write much about my treatment.

The last week has been a bit of an eye opener into the gap in care for the elderly. For those that don’t know, my dad has alzheimers (still not really sure at what level) as well as having had his fall and therefore, after a lot of thought and consideration, it was decided that he needed full time care of some sort. This is all despite the fact he’s done so well since he fell, breaking his thigh. His care in Oxford has been pretty amazing in the main. They (with our support I’d like to think!), have managed to get him to a place I didn’t think we’d reach when I saw him a month ago. I honestly thought I’d lost my dad.

But now, he is walking (albeit with sticks and a frame), can occasionally have coherent conversations, and is smiling with the twinkle in his eye that I remember as ‘my dad’.

However, it seems that there is a big gap for those people who are physically recovering, but perhaps require a bit more support to ensure that they aren’t a danger to themselves when they leave the hospital. We’ve had to start thinking about his move out of the hospital this week and were quite staggered to see that they might send him out with only one physio session a week, when he was on 7 sessions. For a man that was improving daily, it felt odd not to at least stagger the physio to try to reduce the chances of him having a serious fall once he was out.

Anyway, we’ve realised that sadly we can’t change that outcome, and luckily, as a family, we’re able to ensure that he can continue to have physio even if we have to arrange it. I just feel for those that can’t, or worse still, don’t realise that they should be. There’s definitely a big gap where those that are mentally sound, seem to slip slightly through the gap. It’s been an exhausting week, trying to work out where dad is best to go now, and how to deal with this gap in care, but hopefully we are nearly there and we can settle dad down.

I have to say that whilst it’s all been going on, I probably haven’t really been looking after myself very well, and as a consequence, I haven’t had a brilliant week with headaches and exhaustion. Treatment has all gone fine in general and my consultant is really pleased with my progress to date. We saw him on Thursday and he basically was all smiles. He did try and ready me for the fact that I may see a plateau at some point and I wonder if this was because my numbers went down less the last time than the first time. But I won’t think too much about that!

Paraprotein Results:

  • At start – 21.6
  • After 1 week: 16.6
  • After 2 weeks: 14.2

I’ve now had 4 sets of treatment, so there’s a chance that my numbers are even lower without us knowing, so that’s good. It looks like I’ve got another 6 weeks of having my infusions weekly, and then I will be able to drop them to every 3 weeks. That’ll be lovely as at the moment I only have one or two days a week where I’m not exhausted or feeling weird and wonderful…hopefully once it goes to tri-weekly, I’ll get the odd week of being able to enjoy life a bit more. At the moment I can’t even enjoy a glass of wine (which for those of you who know me, will know is a BIG deal!)

At the moment I’m not ill as such so I really shouldn’t complain. I have been having headaches for the past few days, but I think that’s been due to my dad too, so I’m hoping that these will reduce this week. I’m definitely getting the start of my neuropathy back too. This often comes from the velcade that I have as an injection and I’m getting the spongy feeling face, hands and toes – it’s hard to explain in words but so long as it doesn’t turn into the more painful form of neuropathy, I really won’t be moaning. And I’m exhausted.

The main reason is the Dex which I’ve talked about before. My consultant is happy to change it but actually, after the first week, I’ve managed it much much better. I don’t sleep on the first two nights, and the third night isn’t great, but all in all, I’ve now got my moods in check for a lot of it. The kids know I might be a bit more snappy or sad than usual, but in general, I’m trying very hard. I don’t want to change the dose unless it becomes manageable, just in case it impacts on how much the other drugs work!!

But the great news is my consultant is onside, at the moment, for us to consider going on holiday in the October half-term. It looks like it might even fall in-between one of my 3 week appointments which would be amazing. He won’t commit until our next monthly appointment at the end of September, but if things are good then, and I’m still handling the treatment well, we might be able to start looking for somewhere hot for October which would be amazing!

I’d also like to just say thank you at this point for all the lovely support and care we’ve had from family and friends over this first month. It’s hard to explain how starting on chemotherapy, and not knowing whether it will work or not, impacts you emotionally. It’s been a really hard time for Nick, me and the kids no matter how much of a grin I try to put on my face! But we’ve had so many lovely messages of support, cards, flowers and gifts, all of which help us to keep smiling along this long journey ahead of us. So thank you….you all know who you are! x

Our Patient is Home!

Wow, we had a ROUGH week!

Dom was hospitalized on Friday afternoon.  Slidell Memorial Hospital.  Christine flew in on Saturday afternoon.

We had one scare after another.

They thought that he had contracted C-Diff and had him in isolation for 2 days.  We later found that this can be deadly.  Thankfully, he dodged that bullet!

Dr. Michael Nguyen was the admitting physician.  Very NICE guy who put together a phenomenal “dream team” for our Dom.

(In the past, I’ve always chosen to be admitted to another Slidell hospital.  Ochsner.  I might have to change preferences!)

All-day, every day, there was a stream of doctors, nurses, and therapists in and out of his room.

Dom had 2 Kidney Specialists, An Infectious Diseases doctor, A Cardiologist, a Neurologist, Occupational Therapists, and Physical Therapists.

Sadly, Dom is not producing his own blood, thus needing transfusions.  He had 2 units transfused during this hospitalization. The kidney doctors had him on Sodium, Potassium, and Electrolytes.

He was diagnosed with Samonella and was treated with 2 different antibiotics.

He was sent home yesterday afternoon with 8 more days of antibiotics, as well as sodium supplements.

We follow up with his Kidney Specialist, Dr. Kovachev in a couple of weeks.  He’ll be keeping an eye on Dom’s Creatine levels.

Heading to see Dr. Safah at Tulane on Wed.  Dr. Calabresi (Slidell oncologist) the following Tuesday, then Dr. Kovachev later in the week.

It’s been a wild ride.  THANK GOD Dom is home.  I had my doubts last Friday.  He was incoherent.  What a scare.

GOD IS GOOD.  Thank you for all of the prayers and phone calls!

Dom is Slowly Improving! No C-Diff, but Salmonella.

When Christine and I arrived at 11 am, the Occupational Therapist had him out of bed and sitting in a chair.

He’s no longer in ISOLATION.  He tested NEGATIVE for C-Diff!

The Physical Therapy guys were outside his room, ready to pounce on him.  I told them to “Give him Hell”.  They were delighted. 

They WANTED to walk him, but after laying on his back for 5 days, his blood pressure was too low.  They’d test it sitting up.  LOW.  Test it standing up.  LOWER.  They’re going to try to get him walking tomorrow.

Dom asked to go back to bed and we all said, “NO!”.  He ended up sitting in that chair for more than 2 hours.

Our Slidell Oncologist came in.  Told us that he was SO HAPPY that Dom didn’t have C-Diff.  He’s lost TWO PATIENTS from that!  He said that he wants to get Dom STRONG before he gets out of the hospital.  His blood counts are dropping, so I’m guessing that he’ll need another blood transfusion soon.

Then Dr. Koachev, partner of Dom’s Kidney specialist, came in.  He spent almost 30 minutes with us.  Explained that Dom was limited to 2 liters of liquids per day.  Getting IVs of Sodium, Potassium and Electrolytes for his kidneys.  Also told us that his Creatine had jumped from 2.5 yesterday to 3.5 this morning.

Dom’s collar bone started killing him, so they put him back in bed with a percocet.  When he started getting dopey, we left.

Did a little shopping, had a late lunch and came home.

Dom called.  The Infectious Diseases Dr. made an appearance.  She said, “You told me that you had Salmonella once.  Well, you’ve got it again!  No more runny egg yolks!”.

She then went on to say that his Creatine number dropped from this morning’s 3.5.

Feeling hopeful, gang!

New Action With Dom- Blood Transfusions and a Hospital Stay

Hey gang!

It’s been pretty rough around here. 

On Wed. the 29th, he needed 2 units of blood in a transfusion.  His body has quit producing blood.  Either the myeloma cells or something else going on in his bone marrow.  To be determined.

After a few days, he felt like a new man.

THEN…This past week, he couldn’t get out of bed on Wed. or Thursday.  Weak.  Nauseous.  Diarrhea kicked in Friday morning.

His Oncologist had me take him to the ER at Slidell Memorial Hospital on Friday.

They admitted him that afternoon.  He needed yet ANOTHER unit of blood.  He needed Potassium and Electrolytes.

I came in on Sat. morning to find out that they were moving him to the Cardiac Step-Down unit.  They found an enzyme in his blood that could affect the heart.
They wanted to keep an eye on him.

Now he’s in ISOLATION in the Cardiac Unit.  Gowns, gloves and masks worn by everybody.

He’s got quite the team of specialists.  I met a Kidney Specialist this morning.  He explained that Creatine should be a 1.  Dom is a 2.5   Dialysis is needed at 5.  He ordered an ultrasound of his kidneys and bladder.

Then an Infectious Diseases doctor came in.  She said that he has some type of bacteria in his blood.  She’s THINKING E Coli.  They’re also testing him for C-Diff.  Bacterial infection in his colon.  Pretty creepy stuff. 

https://www.medicinenet.com/is_c_diff_clostridium_difficile_contagious/article.htm

He’s got a Neurologist on the team.  Trying to deal with his Neuropathy.

Also a doctor of Internal Medicine.  She ordered Occupational and Physical Therapy.  “Use it or lose it, Mr. Manzo”.  I told the PT to work him hard!

Sooo…  our daughter flew in this afternoon.  When she showed up at the hospital, I left.  She’ll be a great help!  I’m tickled that she’s here.

I was sobbing yesterday.  He was almost incoherent.  No tears today, just smiles.  I like the new team of doctors!  I’m impressed with this hospital, too!

They need to keep an eye on a few things, but he was very engaging today!

July blood test results ā€“ Loving my single digits

So happy to still have low numbers. Loving my single digits big time.

My July blood test results show that my cancer levels (m protein) increased a bit again, but Iā€™m not concerned. Recall that June was 5 and July is 6. Focused each day on keeping them down and reasonably stable.

Life is great – feeling good!

M protein (g/L) (if 0, then no cancer detected)
July = 6
June = 5
May = between 3 and 4
Apr = 3
Mar = between 1 and 2
Feb = 3
Jan = between 5 and 6
Dec = between 5 and 6
Nov = 11
Late Oct = 27 (started chemo)
Early Oct = 48

Self-Portrait
My room contains part of a brick chimney. I thought it would be a nice place for a self-portrait. Love how the natural light streams through my windows.

July blood test results - Loving my single digits


I have multiple myeloma and anemia, a rare cancer of the immune system. Multiple myeloma affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable.

From mid-October to late-May, I was treated with Kyprolis (carfilzomib), an IV chemo, Cyclophosphamide, and dexamethasone.

No lawn to mow

The post July blood test results – Loving my single digits appeared first on Fade to Play.

DVD ā€“ day 4 but feels like a lifetime!

So another day on and I have to say this hasn’t been the relatively easy experience I had back in 2010. I don’t know if it’s because I’m older, whether it’s because my body is weaker second time round, whether it’s the different drugs or something totally different but I am NOT liking this drug regime so far.

Whilst those first two days in hospital seemed relatively straightforward the last two days have been tough. If you read yesterday’s blog you’ll know I’ve been struggling with what’s known as the ‘Dex effect’. After a day of feeling angry and cross about anything and everything, today it has been tears and emotions all day. Thank god by this evening it seems to be calming slightly. I’m still a bit teary but a lot better in general.

The new symptoms for today (whoopee) have been cramps in my calves and the wonderful side effect of diarrhoea. I did wonder about sharing that last bit but this is a record for me and also may mean that others going through the same treatment may realise it’s normal…or tell me that it isn’t and that I’m deluding myself!

I’m going to try and keep positive now that I’m coming out of my downward spiral, and hope that this first week will be worse than coming weeks due to the fact I’m adding new poisons into my body on a daily basis. Weird really to make myself feel so awful when I was feeling pretty ok before Monday kicked off.

I have to say, I’m not quite sure how I’ll do this for 6 months if it isn’t worse at the beginning. I suppose we’ll have to cross that bridge when we come to it. And hope that I still have people who love me at the end no matter what. Thank god Nick and the kids have managed this first few days. It can’t be easy seeing someone you love turn into someone you don’t really recognise. It’s hard to explain it in words on this blog.

Wish me a better day tomorrow…and hopefully my weekends will be a more positive experience too.

One Thing After Another Here

Well, his 8 years of complete remission spoiled us.  The last 2 years have been chaotic!

Dom finished up his 5 days of radiation on his broken collarbone and ribs.  We went in to see our Slidell oncologist on Monday.  He did blood work and made us an appointment with Dr. Safah at the Tulane Cancer Center in 3 weeks.

We were tickled!  Three weeks off!  YAY!

Not so fast…the phone rang around noon on Tuesday.  “Dominic needs 2 units of blood!  Come in today to be matched, then go to the hospital for a Transfusion on Wed”.

We drove into Slidell.  (100 miles round-trip).  They did their blood thing and scheduled us for a transfusion at 8:30 the next morning.

Back to Slidell.  SOMEONE told us that it would be about 2 hours.

They were sadly mistaken.  We were at Slidell Memorial Hospital for 7 1/2 hours!  What a long day.

We were hoping that he would perk up today, but that’s not the case.  He’s exhausted.

So, that’s what’s new here.

Going to Tulane Cancer Center in NOLA on the 21st.  We’re afraid to answer the phone!

Dex f**king Dex

I would apologise for my language but genuinely I now understand what I didn’t last time I had treatment. People used to talk about the Dex effect and it turning people into a Jekyll and Hyde character – I never suffered and never really got it. A funny tasting mouth but that was it.

Oh my god is it different this time. I’m only on day 3 and I’ve already experienced every level of emotion possible, including the most massive anger and frustration. Now, admitting this, does not mean that the reasons for my anger are unfounded, but perhaps the way I’m expressing them and the depth to which I feel them are.

I’d like to scream at certain people. I’m not particularly nice to the kids even when they’re not behaving any differently to normal. Nick has just about got away with everything but I don’t know how long that will last…I think he might just hide away if he’s got any sense!!

I know we’ve got more going on than a lot of people at the moment but life has suddenly seemed to swamp me and other peoples selfishness really grates. Not only am I dealing with starting chemo and all that entails, my dad is about to head into the need for a lot more care after his fall and operation and I don’t know how I can help properly when he lives 90 minutes away. Our builders are progressing but they’re now likely to be in for at least half a week longer than we’d wanted. And that’s before we can try and find a decorator who we can trust to help. My work continues (as I want it to to be able to stay sane and need the money). The kids are on summer holidays while all of this goes on and are already struggling with the fact that things are different and more is needed from them. My back still hurts and to too it all I also have pain from sleeping badly. Thank god the sickness and diarrhoea that the dog had yesterday seems to have subsided.

I’ll leave it at that. Bah humbug that I am. But I needed to vent. Anyone have any idea how long this Dex effect lasts after you’ve taken the tablets? I’m hoping tomorrow will be a better and more positive day.