Quick Update

The new dose of morphine isn’t working. Mathew didn’t sleep again last night. The nurse was already in and her and the Pallliative care team (including Dr. Wildish) are liaising with the Radiation Oncologist to discuss options.

Mathew is not able to lift himself up, from his legs, anymore. The tumours may be affecting the nerves and muscles too much. One of the doctors also said that Decadron also affects muscles. This means that Mathew needs both John and I to get to and from the bathroom and on and off the toilet itself.

We are waiting to hear what the doctor wants to do. More later.

ps – I received the employment services sick pay. *whew*

ps2 – we are in Southeastern New Brunswick so the worst of the incoming rain is not supposed to impact us the worst. It is more to the west. The rivers are flooding from the spring run off already so there are flood warnings issued. We live on a lake which rises during and after storms however our house is high enough to avoid a problem. Let’s see what “Murphy’s Law” says now that I made that statement…

The Hospital Bed is Set Up

Mathew’s bedroom is reconfigured to hold both his queen sized bed and the hospital bed. So far he just looks at the electric bed balefully and won’t try it. Eventually I know he will. The big bed is pushed against the wall with the window and the hospital bed sits beside it (think of how twin beds get set up with a drawer between them; same idea). We moved his tv stand out and put it in the garbage. It disappeared long before the garbage truck came by so someone got themselves a good deal!

The double dresser was moved back into Mathew’s room. It was in our room for months, to make room for the mattress/cot we put into the bedroom to watch over Mathew. John took our Living Room tv and moved it into the bedroom and hooked everything up on the opposite wall. The bigger tv is in there so Mathew can see it without sitting close in his chair. Remember he is supposed to wear glasses although, aside from Disney World, he hasn’t for years.

Mathew was quite uptight by all the hustle and bustle in preparing for the hospital bed and then setting everything up. We already had single bed sheets because Kristen had her single bed until a few months ago.

The recliner fits in the corner of the room between the hospital bed and the closet. It faces the tv so whoever sits there can watch it too.

Dr. Wildish dropped in for a visit again because Mathew’s leg pain is still not well controlled. Mathew fell asleep last night, exhausted, and did manage to sleep until 7 am. He is feeling better and much more chatty but refused to leave his bed because of his legs. Dr. Wildish was loathe to increase the morphine again after yesterday’s significant hike. She came by to see how alert Mathew was and to talk to him about his pain. Afterwards she decided to increase his morphine by a little bit more. We are waiting for the nurse to come with her magical key that opens the machine to increase the dose.

If that doesn’t work then she is considering switching to Dilaudid. Dr. Wildish is also going to talk to the Radiation Oncologist again, to see if Mathew can receive radiation in one “big” dose and what the chances of success are.

Prior to moving the dresser-drawers back to Mathew’s room they were cleaned and sorted. I set items into one of three bags; 1 for garbage, 1 for storage/give away and 1 for keeping. I had to hold each item and decide if it fits Mathew or if it is something he wants to keep. In essence it was housecleaning his effects before he dies. It was horrible. It was a sudden whammy of grief knowing he will never see these things again and won’t be well enough to care about them.

Today was a hard day.

 

 

 

 

 

 

 

 

 

Pain Pump and Hospital Bed

The pain pump was set up yesterday. It wasn’t a good day at all. Mathew realized it meant another step towards the end of his life and became upset. That along with the Decadron made for some trying times. I had to speak to him about his language when the nurses were here. He dissolved into tears saying he was so scared and I told him that was ok but the language was not.

The needle was inserted in the backside of Mathew’s left arm, where it shouldn’t be bumped and used as much as his predominant arm/hand, the right one. John had picked up the cassette with the morphine so the nurses inserted it into the little, portable iv machine. It is a small, heavy machine that is in a fanny pack. Mathew won’t wear it so John or I handle it when Mathew moves around.

The initial dose is halved as medicine absorbs through the interstitial area under the skin differently than by oral pills. It was not nearly enough and Mathew spent another sleepless night in agony. We were given the 24 hour number to call but didn’t. I slept through the night as John took over Mathew’s room.

I called the doctor and Extramural first thing when I got up. The nurse stopped in around 15 minutes later and shortly thereafter talked to the doctor and changed the dose on the machine. The nurse has a key to access the machine and without it there is no overriding the system. So yes, there are security precautions. Tracy first collected the data from the 19 hours Mathew was hooked up, confirmed the needle was still in his skin and the machine was working fine. Then she reported that to the doctor and the change was made.

The continuous morphine went from 3.75 to 5.5 mg. The breakthrough was raised from 7 to 10 mg/dose. The relief came quickly. While he is not completely pain free it is so much better than last night! He is on another 36 hour stretch here and will probably fall asleep early this evening.

Mathew’s decline in mobility is enough that we hurried the hospital bed along. I didn’t know that the OT was arranging for a bed to be bought for Mathew; hence the long waiting period. We called her today and spoke about a loan as that is all that is needed. The bed will be delivered tomorrow. It will be so much easier for Mathew to get in and out of bed and sit up. It is painful to watch him move about right now.

John will rearrange Mathew’s room and move one of our bigger TV’s in there so it can be watched from bed. He is wonderful about doing that for Mathew. He used to bring a small tv and one or two gaming systems to the hospital for Mathew, where he set them up for use. It helped those inpatient stays go by much better.

This is one of the transitions that is difficult for us. It brings us closer to the end and is a clear reminder that the cancer progressed enough to require these changes. Mathew so wants to stay at home and I am hoping we can carry out his wish.

ps. Service Canada called me today and said the issues with my file should be cleared up and I should see some money by Friday. My fingers are crossed!

 

 

 

 

 

 

 

Pain Pump

We  met with Dr. Wildish and reviewed the CT scan report. The only thing on the report that I either forgot or didn’t hear is a spot on Mathew’s right #8 rib. Otherwise let’s just say it is everywhere.

We are moving forward with a pain pump. It will take a day or two to get everything in place to set it up. There is only one pharmacy in the Saint John area who has someone trained to fill the cassette (plastic box) that will have the morphine in it. A needle will be inserted under Mathew’s skin ~ somewhere on his arm ~ and a butterfly thingamajig will cover it and have a connector piece on it. The pain pump will connect to the connector piece. The pump will be programmed by a nurse with the prescribed dose and schedule so it automatically dispenses when it is due. There is a button on it that is preprogrammed for break through morphine that Mathew can push as required. It will only send out a certain amount once each hour so there is no way he can overdose himself.

This gadget will be carried in a fanny pack as it is an automatic 24-hour-a-day pump. Sometimes very ill cancer patients don’t absorb oral medication very well and this injection method is far more efficient for the body to use the morphine.

Dr. Wildish is liaising with everyone who is involved with making this happen.

If it sounds like gibberish it is because Mathew and I pulled another all-nighter. He is still plodding along, in pain and grumpy as hell. That Decadron kicked into gear and gave him an appetite and the Energizer bunny stamina. It ain’t pretty people…. I am heading off to bed for some sleep as John took the day off.

First though I am trying to get through to Service Canada again because of a major clusterfook regarding my sick leave claim (for older folks; the employment insurance program). I was on compassionate leave for 6 months and then went online and followed the instructions to apply for the concurrent sick leave. Read: I FOLLOWED THE INSTRUCTIONS.

Everything has since turned to crap regarding receiving money from the government for the 16 weeks I am entitled to. I have called and spoken to 4 people already and also went in to personally visit the office in Saint John. It is one of those never-ending circles that make me want to tear my hair out. Apparently I was supposed to file a concurrent claim rather than a “new” one.

The people at the Service Canada office are front line workers and cannot access anything in the file other than to look at it and tick certain boxes. So I have to call the infamous 1-800-you-are-in-hell number. The one that gives you the royal run around without giving you an option to talk to someone. Somehow I did though and the last time I spoke to a representative, she went through the information and said the problem would be cleared up by April 25th and to check on my online file for an update.

I called her after I tried to file the second report and the Service Canada website flashed me an exclamation mark and “error you must call” message.

I figured good faith and all that, everything would be fixed. So I went on yesterday to file again and now it says I missed the last report in so the whole claim has to be reactivated. When I check in the file it says a decision is still pending. I call the wonderful 1-800-we-hate-you number to be told they are too busy to talk to me so try to get help on their website.

My eyes are flashing, my temper is boiling, and I don’t feel.nice.any.more.

I may have to call tomorrow.

Good thing I’m not a single parent relying on this money to live on. It rates right up there with my employer’s new pay system, the infamous Phoenix system. Service Canada had to set up some dummy account to get me money last fall because Phoenix can’t spit out paperwork in a timely manner. Given that so many people are either owed thousands of dollars or have to pay back thousands of dollars because of this new and “improved” pay system the government insisted on rolling out even though these critical errors and flaws were well documented before it completely rolled out….. I am SCREWED.

Rant over, sleep is needed.

John is taking care of our beloved grumpy bear and hopefully his pain will be much better managed within 24 hours or so.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Oh Sh*t!!!

Dr. Wildish called me on Friday with an update on those CT scans.

If you recall Dr. Wildish manages the Palliative Care Floor at the hospital and Dr. Hemmings looks after the Extramural (outpatient) side of patient care. They are switching places effective Monday, 1 May, so now Mathew falls under the care of Dr. Wildish. We met her last June when he transferred from active care to palliative care.

So… Dr. Wildish had a printed copy of Wednesday’s CT scans. That preliminary review we had? It was nothing. NOTHING compared to this. This report reflects the true tragedy that is Ewing’s Sarcoma. I told you before it is extremely aggressive and without anything to slow down or stop it…. well, I won’t see sizes until we receive our copy of the report on Monday morning.

Until then, this is now what we know: There are numerous cancer lesions in Mathew’s dura, with one particular tumour growing into his skull. There is cancer along his spine at the T11 and T12 and 3 new tumours in the soft area around the spinal cord at the L2 and L3. The L3 is where the original tumour is, if you recall. There is cancer in his right ilium and another at the top of his right femur. There is cancer on his breastbone (at the front where the ribs join) at on his right shoulder blade. There is cancer throughout his liver and in both kidneys and adrenal glands. There are new tumours in both lungs and the lining (pleura) of both lungs. The tumours that were already there have grown. His left lung has collapsed a little where that liquid is at the bottom of the left lobe. The lymph nodes throughout his abdomen have cancer in them.

As his arms and legs weren’t scanned there is no information on them but who the hell cares by now? Pretty sure there will be spots there too.

I asked the doctor is any of this new cancer was evident at all in that last scan done on December 22, 2016. The answer is no. This spread and grew in the last 4 months. That is the devastation of Ewing’s Sarcoma and I know of cases where it spread even faster – more like it exploded in just a few weeks.

Dr. Wildish is meeting with us on Monday morning to discuss these findings and to determine what happens next. That would be medication, radiation, etc. Radiation is already a no-go as far as Mathew is concerned.

I did tell Mathew his cancer spread. He knows that there is more in the lungs and what was there already grew. He knows he has a spot on his right leg, in his spine at the original location, and also in his right shoulder. He already knew this was probable based on his pain and it is so important to legitimize it for him. He told me he wants to sit in on Monday’s meeting. He has the right if he wants it; there is a lot of time between now and the appointment to reconsider. We shall see what happens.

In light of this report Mathew’s Nortryptyline (sp?) was already doubled and so was the Decadron. The morphine was put back up to 90 mg both morning and evening. None of that has impacted the pain in his legs. Our goal on Monday is to push for something that will relieve the pain. He has suffered enough.

Mathew is very unsteady on his feet right now, both due to general weakness and also side effects of the new doses of medication.

Speaking of him that is where I am heading back to right now.

 

 

 

 

 

 

 

 

 

 

 

 

The Cancer Has Spread

It isn’t good news.

Mathew had his CT scans this morning. Once we returned home I called the doctor’s office and left a message that he had just finished his scans.

Dr. Hemmings called me shortly after lunch and asked if she could stop in and discuss the preliminary findings with John and I. About half an hour later she showed up at the door and we got the “first glance” news. This means she went over the scans with the Radiologist for a preview. The scans haven’t been measured against previous scans or detailed for a report.

The basic report is Mathew’s cancer has spread. It is in his brain, throughout the lymph nodes in his abdomen and in his liver. There may be something at the original tumour site as well. The tumours in his lungs grew and there is a small amount of liquid in the bottom left of his lung.

The tumour in his head, Dr. Hemmings thinks, is in the right lobe. She is not trained in scans and was looking at them backwards as they are presented on the screen. It is in the dura (underneath the skull there is a lining over the brain; that is the dura…simplified). It appears to have bone/skull involvement as well. The doctor thinks the “cyst” behind Mathew’s ear is the lymph node, which is located there, affected. There is a little bit of swelling at the tumour site in Mathew’s head but hasn’t affected the brain at all. Meaning that nothing looks pushed aside or squished. There are 2 other lesions on his brain but at first glance they aren’t sure if they are benign or cancerous (ha ha ha ho ho ho ~ benign… as IF).

For some reason there was no scan done from under Mathew’s chin to the level of his lungs. That means no one knows if something is affecting Mathew’s right arm. I guess we’ll take it on faith there is something…why the hell not?

The doctors did not see anything compromising Mathew’s spine. If there is something affecting his right leg then we’ll have to wait for the report. As I pointed out, at this stage if Mathew has pain then no one is going to tell any of us it is imagined. It just means the medical community hasn’t figured out where it is coming from yet.

Mathew is weaker than we realized. He made it to the truck and to the hospital. He got through the appointment okay and then John retrieved the truck and met us at the hospital entrance. We were both helping Mathew from the wheelchair to the truck and as soon as he tried to lift his right leg he collapsed. John and I grabbed him as he sank so he did not land on the ground. Trying to get a firm grip without hurting him was impossible as a couple of people rushed to help. John and I had to grab Mathew any way we could to hoist him into the truck.

The truck isn’t jacked up on wheels; in fact it is a smaller truck but a full cab. It is the Honda Ridgeline.

The next problem occurred when we got home. John pulled the truck up to the garage entrance and each of us took one of Mathew’s arms and put them around our shoulders. He managed the first, small step from the garage to the house. The second and final one… he collapsed again. He insisted we let him rest on the hallway and he could get himself up.

Nope.

We picked him up and took him to bed.

Mathew slept maybe an hour last night due to pain in the right leg and stress over today’s CT scan. It was the first time he left the house in over two months. He was so upset about collapsing (sinking) and realizing how little strength he has. He asked if I was going to tell people and I replied damn right I was! His safety is our first priority and the more people around him who know the more help they can be. He thought about that for a minute and then declared, “Yeah! Tell people they can’t come over unless they are willing to help me!”.

Done, kiddo.

Mathew will NOT be told these results. There is no need for him to stress and worry over issues he has no control over. He trusts us enough to let us share what needs to be shared. As always I ask that you respect these wishes of ours. Mathew will just be told that the cancer affected his muscle here and there ~ which he already knows ~ and the doctor will adjust his pain meds to accommodate the information.

The Radiation Oncologist is reviewing his scans but there will not be any radiation. Mathew would have to be admitted to the hospital for the duration of treatment, which he already refused. As radiation would not extend his life then he doesn’t need to spend any of his precious time in a hospital if it can be avoided at all.

Sometimes if the lungs fill with liquid then a procedure is done to drain the fluid. The amount in Mathew’s left lung isn’t an amount to be considered and when, or if, that time arises then his whole health picture will be assessed before subjecting him to anything else.

That is all for now

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

A CT Scan will be Ordered

So the weekend went by and it wasn’t great for Mathew. The first night on the new 90 mg dose of morphine went well, in that he slept from 11 pm to 6 am or so. That is a whole night for him these days.

Other than that there doesn’t appear to be much of a change as far as Mathew’s leg, arm and head goes. The palliative care doctor called to follow up today and we discussed current events a little more. The morphine is not working for the areas I mentioned. Over the weekend Mathew just sighed when he told us he was in pain and wondered the use of breakthrough morphine because nothing helped. He mentioned the pain is worse during the night (his leg).

In order to know how to proceed, Dr. Hemmings wants to do a CT scan to see what the issues are or to rule things out. The aim is to look for tumours on his spine and in his head. I requested that if those areas are being done for a scan to also be done of his lungs. We can see what changes happened in the last 4 months.

Dr. Hemmings thinks Mathew’s pain may be nerve related in which case morphine is not going to work. She chatted with Dr. Naz today ~ Mathew’s Radiation Oncologist ~ who feels the symptoms may be new tumours. I pointed out that should there be something new in the spine, along where the original tumour was/is…. then he already had his lifetime dose of radiation to that area. Meaning no more radiation.

That point is moot anyway because Mathew adamantly reiterated NO RADIATION. Dr. Hemmings said it would only be a week or two of radiation and that Dr. Naz could do most of the preliminary work without having to see Mathew.

NOPE.

Okay, so let’s move on then. I believe the CT scan may help Mathew’s team decide on how to best treat whatever is going on. There was no mention of that ultra-drug, the “Hydra- or Hydro-” something. Before doing much more tweaking of medication, the CT results are desired.

Mathew agreed to a CT scan today when I talked to him. It is the quickest and easiest test between the ones he gets. The MRI takes a lot longer and there is the matter of the tube in which a lot of people get claustrophobic.

Meanwhile, we are dropping Mathew’s morphine back to 75 mg in the morning and observing any changes. Perhaps it is helping with the chest area pain because he didn’t comment on that this weekend. He will still get 90 mg at night in the hopes of better rest. That nerve drug I mentioned in the last post will be postponed, again until the doctors see what the tests show. The clonazepam will continue ~ Mathew needs a small amount of Ativan in the morning and then nothing else. That decadron is a squirly drug that messes with his mood when it first gets in his system.

Mathew ended up sleeping through the weekend. He started one of his down periods which begins when he feels awful when waking up. Today is now day #3 without eating… sigh… and he has no interest in food.

John and I are becoming old hands at bed changes. On some days Mathew’s sheets need changing up to 3 times ~ if he lets us. I have taken to running a facecloth over Mathew’s head and upper body when he soaks everything, in addition to stripping the bed and changing out the pillow.

Mathew’s a little compulsive… obsessive… about his bed these days. The covers and sheets have to be just so and any wrinkles bother him terribly. Sometimes those sheet sets don’t pull very tight and so I am often straightening the sheets and tucking them in again.

Gimley likes to sleep with Mathew and often he is allowed to do so. After his 3 pm meal Gimley has a particular meow that is unique. It is the cry of him asking where are you and where can I nap with you? Mathew hates the sound but I remind him that Gimley is just looking for us. He hops up (er, scrabbles and tears his claws into the mattress as he drags his fat body up is more like it) and passes out on the other side of the bed from Mathew. If it is before his dinner then Gimley hauls himself up to the back of Mathew’s recliner, where I sit, and huddles there staring at me until it is 3 pm. So long as the cat is quiet, which he usually is, then Mathew enjoys the company. We aren’t allowed on the bed presently so Mathew is indeed feeling off.

Not too much else is going on. The snow melted and spring is trying for a comeback. All the birds are singing up a storm and the hawks and eagles are fishing for their supper in our lake. There is a pair of geese who like our backyard and waddle up close to the house ~ making looking for a nesting spot? They figured out, somehow, that we don’t have the dogs anymore so no worries about that.

More as it follows, as always

 

 

 

 

 

 

 

 

 

Doctor’s Home Visit

The palliative care doctor ~ pain specialist ~ dropped in for her visit yesterday afternoon. She talked to Mathew for a little bit and then her, John and myself retreated to the dining room for a review of Mathew’s medications.

The discussion started with the possibility that Mathew’s headaches are metastasized cancer. The only way to know if there is a tumour in his head is to do a CT scan. That would require a trip to the hospital. Keeping that information from Mathew would probably be near impossible and this topic is something that he just doesn’t need to know or worry about. Then, IF, the CT scan revealed a growth…. well, what? The only palliative treatment (aside from pain medication) would be radiation.

Radiation would require numerous trips to the hospital, creating the radiation mask that bolts his head onto the table during treatment, plus side effects that are not pleasant. This plan would not extend Mathew’s life, it would only be to reduce the tumour, if there turned out to be one. Which no one knows he has or not.

Nope. Not doing a CT scan or anything else. Mathew has negative associations with the hospital and would panic and probably refuse to go. Remember also, he has not left the house in two months. TWO MONTHS.

Ruling out a CT scan and radiation, in the event of a tumour in his head, the other option is pain treatment. This is the option that makes the most sense. The other factor in the decision making process was to keep Mathew home if possible. This makes changing medication a little trickier because stronger drugs mostly require an in-hospital stay for monitoring and evaluating new drugs. We decided on a plan that will keep Mathew at home.

The first change is to increase Mathew’s long acting morphine dose to 90 mg every 12 hours. He was receiving 4-8 breakthrough doses daily and this step should avoid all that additional dosing. He received his first dose last night. He slept through the night!! First time in forever! His second dose was this morning and there were no side effects seen. His speech was fine, he acted normal and so far received one break-through of 10 mg only.

In fact Mathew took his first shower in weeks! It was a great change from sponge baths and much easier and quicker to do. Although he worried about a shower draining his energy level overly that didn’t happen. Given his frequent and drenching sweats it is good to use the hand-held shower head to wash the grime off of him.

The second change made to Mathew’s medication was to introduce Clonazepam to hopefully replace the Ativan. Remember I said the Decadron has a less than desirable side effect of mood instability? That along with increased pain levels and just the stress and anxiety of dying…. explains the uptake in his Ativan dosing. Ativan is a 4 hour drug whose effect is similar to a roller coaster. The Clonazepam is a long acting equivalent of Ativan that is administered once a day. Mathew started on a low dosage of 0.5 mg this morning. It didn’t kick in soon enough so he also got 1 mg Ativan when the good ol’ Decadron affected his mood. He got the Ativan this morning and so far hasn’t required anything further. The Clonazepam can be increased if he stills needs multiple Ativan on a daily basis.

The third change to Mathew’s medication plan will happen on Monday night, when Nortriptyline is introduced at a 10 mg dose. This is a drug for nerve pain. It is given once daily.

See a pattern emerging yet? Rather than frequent, short acting and break–through medications the doctor is switching to longer acting remedies. The changes are introduced gradually so Mathew’s health care team can determine any side effects of each medication. If everything was introduced together then it would be hard to know which drug caused an undesirable effect.

If the 90 mg of morphine doesn’t work then the doctor is considering adding a more powerful drug…. called “Hydra~ or Hydro~” something. Whatever it is she did say it is 5 times more powerful than morphine. It can also be introduced to him at home while many other drugs would have to be started as an in-patient on the palliative care ward.

As an aside to this, I learned that there are two doctors on the palliative care team. One doctor works the floor at the hospital while the other one does the community/at-home visits. They switch periodically. They are used as a consult service in our Province (New Brunswick) while the overall care remains with the primary family physician and Extramural.  After our visit the doctor will send the treatment suggestion plan to Mathew’s family doctor for implementation as necessary.

Whew! It was a busy and productive meeting. Our discussion ranged over a few topics, another one being Mathew’s gradual muscle weakness. It is harder for him to get out of his bed even with the bar the occupational therapist brought over. Mathew has neck and arm pain from struggling to use all of his resources to move about and get in and out of his bed. Along with his weight loss there is also muscle loss, partly due to cancer and probably also due to residing in bed. The palliative care doctor said that back pain is frequent as those muscles weaken, something which Mathew remarks on when he sits. After a short while his back hurts him too much to stay sitting.

The respiratory therapist visited two days ago; Hi Bill! Bill reads my blog! Neither of us know how he learned about it existing but he finds it useful because I supply frequent updates on Mathew’s daily life. I never thought of that. Bill didn’t realize the blog is also a useful tool for family to receive updates which minimizes repeating the same information through texting and phone calls. Mathew gets upset when I spend any time not concentrating on him. It also helps family plan visitations. My blog was never private or “hidden” but sometimes I am surprised by visitors! Once I knew Bill reads the blog I shamefacedly asked what is official title is since I forever change it; he laughed and replied he knew I meant him. I have the correct title now and will keep my good manners in writing!

When I write on here I am always aware it is a public forum and try to maintain an objective and fair discussion. There were maybe one or two instances where my anger definitely flowed onto this page but those were justifiable circumstances and I stand by my words. It is not my intent to harm or cast a deliberate negative light on anyone; rather to share information from my personal perspective. Hopefully in a friendly and neutral manner (ha ha ha… no one EVER said my opinions are neutral!!)

Okay back to the respiratory therapist. He took Mathew on a short hallway trip and noted his oxygen stats and listened to his lungs. I thought Mathew’s resting stats were 92% and 118 heartbeats per minute, but I think Bill put down 93%. No matter; the oxygen level dropped two points when Mathew walked and his heartrate increased by 20 points. Both of the lower lung lobes had decreased oxygen flow, the left more than the right lung. Bill will be visiting every 2 to 3 weeks to keep an eye on those stats. He is a very nice, friendly fellow whom Mathew enjoyed talking with.

On days where we visit with a doctor overseeing Mathew’s care, John and I find it hard to wind down after. They can emotional visits that drain us both. I did not fall asleep until close to 4:30 am today and spent the day in a sleepy fog. After John got home from work I crawled over to our bed and descended into a wonderful nap that only a very comfortable mattress set allows. That mattress on the floor is a godsend but in no way comes close to matching a luxurious box spring and mattress set!!

Mathew seems to be on a slight down trend again. For the third day he sleeps more and is up for a shorter period of time. This morning was the first morning he woke up feeling okay and not in a “terrible” state. His headache is back and plagued him today. It is on the left, front forehead area. The cyst behind his ear is big again and I assume it will drain once more in the next week or two.

Update Today

The nurse stopped in this afternoon and brought her stethoscope and oxygen stat thingamigjig with her. To our great, unpleasant, surprise, Mathew’s resting heartrate was about 122 beats per minute (bpm). While he walked maybe 10 paces to the kitchen his heartrate jumped to above 150 bpm. He sat in a chair for a minute then walked back to his room with the same result. His usual resting heartrate lately is about 80 bpm.

His resting oxygen stat was 90% today, down 1% from last week ~ I think it’ll vary slightly. His walking oxygen stat was 92-93% which is the direction it should go so that isn’t as much of a concern.

Now when the nurse listened to Mathew’s lungs, she did hear some airflow into Mathew’s lower left lung lobe…. you know, the one I said had no airflow last week.

Yup. I’m just as confused as you are.

Tomorrow the respiratory therapist is returning; his first visit since January 9th. He will check those vitals again. Perhaps that busy heart was a one-off for some reason.

The pain specialist is scheduled to come in on Thursday, in the afternoon. Mathew is still requesting frequent break-through medication. I wonder if the 20 mg of morphine per break through might cause his increased heart rate?

His noggin seems fine; no extra lumps or anything from that fall he took yesterday. His arse is a bit worse for wear but his spine isn’t bothering him, *whew*.  Mathew managed to sit for a while in his recliner today and he made it to the bed as we agreed he would, without any issue.

Aside from that the only other news to report is freaking cold weather is back. Winter type of temperatures. It is dipping to -7 degrees Celsius either tonight or tomorrow night.

Boooo!! Enough of that already.

 

 

 

She Left… and He Fell ~ Again

Oh why do I have to keep posting these two things? Yesterday just wasn’t the best day for the two reasons I headlined above.

Kristen flew home to Ottawa yesterday at noon. She flew through Toronto since there is no direct flight from Saint John. On an earlier trip she managed to change the connecting flight to an earlier one and so she tried this time as well. The ticket agent booked her on the earlier flight only to find it was full. Come to find out when the agent did THAT he/she released Kristen’s paid-for seat in the original connecting flight. Yay!! She then had to wait ~ on stand by ~ and was able to catch the flight because there just happened to be one unfilled seat. She had not been informed that her allocated seat would be given up….automatically? Deliberately? Fortunately she did arrive home as planned, wiser for the wear and tear of flying.

It was rough when she left. It gets harder each time right now and she leaves a huge void that screams, “Daughter/sister missing!!”.

Mathew’s pain just won’t quit this weekend. It always flairs up on a Thursday and we end up scrambling through the weekend until the following week. He is still getting the doubled up break-through morphine at times every two hours.

The fall Mathew had yesterday could have been so much worse. I was standing right beside him but couldn’t do anything. This time we watched most of a movie and he got up from his chair. He usually walks around the bed to get in on the side that has the side bar to grip. This time he noticed the cat resting on the other side of the bed, so leaned over to pet him. He was fine, everything was fine…. and then he straightened up. In front of him was his bed. On his left I stood. On his right, against the wall, was the side table and further behind, the tv stand with everything on it. He fell back. He fell between the tv stand and his chair and so I couldn’t get to him because the chair was blocking me. He fell onto his backside and his head hit the wall. He was screaming and wouldn’t let me touch him, so I scared the bejeezus out of John by throwing open the garage door and screaming at him for help! He was working on the jeep so I had to yell to catch his attention.

We got Mathew up and onto the bed. I checked him over and also looked at the wall; thankfully he didn’t hit it hard enough to dent it. It is frightening beyond words to watch someone you love fall and you can’t do anything in time to help them. My hair stood on end and turned a little more gray in a futile attempt to get to him on time. I worried that if I grabbed his arm and pulled, matters would be made worse ~ perhaps by swinging him into the entertainment stand. In my mind I saw the stand tipping and the tv falling on him.

It took a while for everyone’s frazzled nerves to settle; especially Mathew. Once again we reviewed the situation and have already made changes. When Mathew gets off the chair he is to get into his bed on the same side so he isn’t moving around anything. John and I are looking at rearranging the setup so he can watch tv from his bed. Mathew doesn’t want that but given his penchant for falling… it might not be a choice any longer.

Mathew’s shoulders and his neck hurt from the fall. So does his backside/back. It jarred the area on his lower spine where the cancer ate part of the vertebrae so no kidding that hurt like hell for a while.

Aside from that ~ which ended the long weekend on a sour note ~ Kristen and Mathew enjoyed their visit and hung out as much as Mathew wanted. Kristen shared her chocolate Easter bunny and Mathew declared it to be the best chocolate ever ~ along with the chocolate bar he got from Mexico. Mathew enjoyed shopping with his Easter money, which he received in lieu of edible goodies.

It rained yesterday which fit our mood perfectly.

I hope your Monday was much better!

(ps it is 5 am so no updates on weekly medical visits or checkups yet)