Tag Archives: health

Carotid Artery Dissection is Healed!

We had two updates, one from the neurologist by telephone and one from the interventional radiologist via another telehealth conference. The MRI results were carefully quantified and reviewed and then forwarded to both of these specialist. The neurologist called and told us that the carotid artery shows up in the MRI as healed, no more pseudoaneurysm and, providing the interventional radiologist agrees, we can declare the carotid artery dissection completely healed and stop the blood thinners.

After this news I found myself feelings like I was in shock. It was a pleasant shock, but still a shock. I was trembling. I was in tears. All these longs months, all the worry, all the fear, all the careful watching. We are done. He is healed. We can start thinking longer term again. It was really hard to wrap my brain around the news. I ended up suppressing all my happy happy thoughts a bit and reminding myself the interventional radiologist must agree first.

And the interventional radiologist agrees with one caveat. It can be difficult to do comparisons between imaging modalities. There has been so much improvement between the last CT and this MRI he can’t quite believe it or trust it. He agrees the MRI does indeed look like the artery is fully healed a huge and very pleasant surprise since he did not think pseudoaneurysm ever would given how big it was. He even had another radiologist (someone whose ability and skills he really trusts) look at it just to make sure and this fellow also agreed the artery has healed.

His recommendation is that my husband continue with the blood thinner (generic form of plavix for a full six months since the last time we saw the pseudoaneurysm just to be on the safe side and follow the standard recommendations for a dissection and then image one last time with CT to really confirm the astonishing healing shown in the MRI. We agreed to this. My husband has six weeks of his blood thinner left so he will finish the bottle and have the hopefully one last CT and then we can call the carotid artery dissection incident finished and done with. Amazingly enough, there is no evidence of any kind of a stroke from the dissection on MRI. So if asked, we can honestly say no it was not a stroke, it was carotid artery dissection with transient symptoms.

I had another happy cry.

Can you see me smiling?

Choose Joy

 

Health Update – Carotid Artery Dissection with Pseudoaneurysm.

A short report that is nice because it contains good news. We are seven months since the diagnosis of a carotid artery dissection. My husband got called in for an MRI. The reason for the doctors being concerned about this is because my husband is at a much higher risk of throwing a clot due to the healing carotid artery dissection with a large pseudoaneurysm because of narrowing at the site of the injury.  You may recall there was a debate about stenting (relatively high risk especially when compared with his clinical symptoms which are none.) The MRI was for testing if the carotid artery dissection caused a stroke of if it is throwing off small clots and causing micro strokes. Micro strokes are tiny strokes that do not show up clinically but accumulate over time and eventually can lead to dementia. They can only be seen using MRI. Our doctor gave us a copy of the report on the MRI and the neurologist’s report and it was overall positive.

The MRI did not show sign of anything beyond a “smooth narrowing” of the artery. Compared to the last report from October with a CT that is an improvement. To be properly cautious, it is hard to compare across modalities however since the clinicians seem to think that’s a positive improvement, we’ll definitely take it. There is still a thrombus/clot where there was before but the MRI seems to show it was smaller (again the cross modality issue makes me hesitant to say it.) Also the MRI works by producing a specific signal when a specific magnetic frequency is used. The signal that came back was for a blood clot and not the later final stage of a healed clot. It apparently takes 4-6 months for this process to start so it is not a surprise nor is it bad news. It just means the healing is not finished. The thrombus certainly is no bigger.

The really good news is the MRI could not detect the stroke damage. Strokes show up as bright spots and the brighter and more solid the spot, the worse the stroke. In my husband’s case there is only one very small, very faint and only slightly brighter spot and no where near where he should have he had caused by the carotid artery dissection. Best of all, no sign of any other micro strokes or secondary damage or anything else. He has two tiny plaques in his arteries, matched on both sides, which are often found even in healthy young men and we already knew about those from the previous CTs. The letter from the neurologist states he has ruled out any progressive neuropathies or vasculopathies (i.e. blood vessels and nerves, brain are as normal as can be for 76 years). The specialist thinks it was just the unlucky seatbelt accident. Further our family doctor told us he can confidently state my husband is now clinically stable if a travel insurance company were to ask. (Due to the past history of carted artery dissection that might still be an issue but we’re not ready to start traveling right now anyway.)

We also got permission to try reducing the last of three blood pressure medications he is on back down to the level he was using to control his blood pressure before all this started. (He has been on a double dose of his ace inhibiter since the dissection after using it for many years to lower his blood pressure.) Again, it has to be done carefully with daily monitoring twice a day (morning before taking the pill and evening) but six days into it and my husband’s blood pressure has actually been a bit lower sitting nicely at about 130/80 give or take 5 points with the majority being about 125/75 for the evening check and slightly higher for the morning check before taking the pill.

There we are. Slight improvement, no sign of the bad stuff the MRI was supposed to detect, no need for stenting at this time, no more visits to the doctor until late spring unless something changes. Blood pressure med down to the previous level. At some future point yet to be determined, another imaging check of the artery will be done (likely by ultrasound) and if it is healed my husband can stop taking the generic plavix blood thinner although the neurologist said he should be taking a baby aspirin for the rest of his life.

There is a special Hebrew blessing for when one has had a near miss with death and been delivered from it. I am tempted to ask my husband to arrange now. (It has to be said in a minyan of ten Jews after a Torah reading) but I won’t just yet. Instead, I’ll ask for the continued healing prayer to keep on being said since we are not all the way there yet. (You can hear a woman sing the prayer in Hebrew here.) In English it goes like this:

May the One who blessed our ancestors Abraham, Isaac, and Jacob, Sarah, Rebecca, Rachel, and Leah bless and heal Yitzhak son of Dina. May the Holy Blessed One overflow with compassion upon him, to restore him, to heal him, to strengthen him, to enliven him. The One will send him, speedily, a complete healing, healing of the soul and healing of the body along with all the ill, among the people of Israel and all humankind, soon, speedily, without delay, and let us all say:  Amen!

Health Update – New Doctor and Polypharmacy

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This month we attended the Grand Ole Kinosota Opry (think Karaoke with a few professional musicians thrown in doing old country favourites) and we had a great time. I snapped this selfie sitting on my husband’s lap.

Yesterday we made yet another trip to Neepawa where, among other things, we saw the new neurologist. Mostly I came away feeling really positive. The new fellow agreed with all the reductions in medication our own family doctor has implemented. Recall my husband was on five different drugs, three of which were to lower his blood pressure. He was having some very nasty side effects. One drug a generic version of lipitor was in the cocktail even though my husband has no issues with high cholesterol or any other lipid issue. His lipid levels were normal. I’m not sure why this drug was included in the cocktail but for three months my husband suffered terrible leg cramps, especially in his thighs, that would wake him in the middle of the night with pain so bad he would literally scream. We were told to stop that drug as soon as the first neurologist heard about it. While the cramps got better right away, it was another two months before the cramps finally stopped completely.

The two extra blood pressure medications had side effects including sleepiness, swollen ankles, sudden drops where his vision would go black, dizziness, inability to tolerate heat, problems with becoming dehydrated, an inability to tolerate even the most mild exercise beyond slow walking, and “The Wall”. “The Wall” being terrible fatigue that came on without warning and required he immediately going to bed, lie down and sleep. Initially, we assumed that The Wall was purely an effect of the suspected stroke. Now I am not so sure all of it was that. Second to go on the cocktail list was a drug called amlodipene, a calcium channel blocker. First, we reduced it by half for two weeks while monitoring his blood pressure and then we got rid of it completely. For the first couple of days after the drug was reduced/removed my husband got some wonky readings including a couple of weird high ones but they soon settled. There was an immediate and very noticeable improvement in just about every measure of my husband’s alertness, ability to tolerate exercise. Plus “The Wall” rather abruptly vanished.

Third to go was the diuretic, hydrochlorothiazide. Again, the same few days of wonky readings and then the readings not only settled down nicely, in fact, they went lower than before. We are now consistently below 140/80 with the majority readings in under 130/80. And much to everyone’s surprise but mine, so did the swollen ankles. Now hydrochlorothiazide is supposed to prevent swollen ankles by draining away excess water but if you read the fine print the pharmacist gives you, it can actually cause higher blood pressure and swollen ankles in some individuals. Another very nice bonus was issues with our love life vanished. I’ll spare you the details but hydrochlorothiazide is renowned for its ability to turn vigorous healthy men into limp noodles. Some people may prefer their men in that state. I am not among them.

My husband is now back to the single blood pressure medication he has been on for the last twelve years, a drug that was prescribed to him by another metabolic specialist after a lot of tests and (I am most annoyed by this part) a trial of both another calcium channel blocker and hydrochlorothiazide. The first was ineffective and the second proved to make things worse, not better for him. So why did no one listen to me when I complained about adding drugs that we already knew didn’t work? I’m just the stupid wife with a PhD in human genetics specializing in metabolic pathways, so what could I possibly know compared to Almighty Doctor? Can you see my eyes rolling so far back in my head I can see my tenth birthday? My only regret is I caved in and let the doctors push me into putting him on these drugs and it took a lot to finally get someone, namely our family doctor, to actually listen to me and agree to try stopping them in a safe supervised way.

The new neurologist did not talk about putting my husband back on any of those drugs. (Much to my relief as I was ready for a fight.) He did explain why my husband needs the anti platelet drug clopidogrel bisulfate (generic form of Plavix.) As long as my husband has this narrowing of his carotid artery the blood is rushing through like rapids through a chasm. Blood can get caught in eddies and swirls that can cause a clot to form. A clot could trigger a stroke. Now I “get” it. However the new neurologist was also specific that when the pseudoanuerysm heals, we can stop the clopidogrel bisulfate. The neurologist says my husband will need to be on baby aspirin for the rest of his life. We’re both fine with that since he’s been on the baby aspirin since he started the high blood pressure medication and he’s tolerating the clopidogrel bisulfate very well.

The neurologist also agreed with the interventional radiologist that a 5-10% chance of having a stroke or even dying while having the stent put in for someone who has no symptoms, means the stent is a bad idea. He also agreed my husband needs to have an MRI to rule out so called “silent strokes”. Silent strokes are very tiny strokes that have a nasty cumulative effect and eventually can cause dementia. The anti platelet medicine should be preventing these silent strokes from happening. Only an MRI will tell for sure. I explained how the doctors in Brandon had decided he could not have an MRI due to some metal in his leg from a bad break many years ago. The interventional radiologist had told us that was nonsense and the new neurologist agreed. At some point, we will get the appointment to go have an MRI. Given this is now elective, that could take a while with Canadian wait times. The new neurologist asked about homocysteine since that is a key factor in many silent strokes, but the previous neurologist had already ruled out high blood homocysteine levels via the blood tests. It was nice he explained the connection between homocysteine and silent stroke as opposed to saying the equivalent of “It’s normal so don’t worry your pretty little head about it.”

I was also very happy to be able to tell the new neurologist that from our perspective, life has pretty much returned to normal. I came away feeling very positive about the longer term as well because this specialist seems to think that eventually the artery will heal and the sword of Damocles hanging over my husband’s inner carotid artery will eventually be gone. June is when we will reassess and we can do it with ultrasound. For now, we carry on as we have been, living normally.

This entire adventure got me thinking about a very common problem with the way we practice medicine. Polypharmacy is a real and dangerous problem. I’m not sure why my husband was sent home with a cornucopia of fives drugs in a messy cocktail that caused him so much trouble. Maybe he needed all that in the early days post carotid artery dissection. Maybe it helped his healing and then once the healing was done, it would have been safely stopped eventually even if I had not fussed so much about it. Maybe he was ‘overmedicated” right from the beginning. We’ll never know. My personal feeling is he was given a standard cocktail of post stroke drugs appropriate for someone with multiple risk factors like diabetes, poor lipid profile, and uncontrolled high blood pressure. No one took into consideration that his supposed stroke was not caused by any of these and two of these drugs had already failed in his past history. Rather, his stroke symptoms was that typical of a much younger person caused by an accident that tore his inner artery.

My advice is one should never just stop the drugs doctors prescribe. However you should question each and every drug as soon as it is prescribed. If you think past history means the drug is not a good idea, say so and keep saying so until the doctor listens. If the doctor won’t listen, find a new doctor. Don’t take glib explanations for the reason for taking the drug. Do take the time to read all the fine print in those sheets the pharmacists hand out. Know exactly what those side effects are and promptly report them to the doctor. Insist on a serious reconsideration of the drug with an eye to deprescribing as soon as the side effects pop up. Wave the pharmacist’s sheet in front of the doctor if you have to, to make the point. Finally, conditions change and you need to review all the drugs you take with an eye to deprescribing at least once a year and certainly whenever a change in your health happens. Always reduce the number of drugs you are on under the supervision of a doctor you are confident with. NEVER just stop taking them on your own. If your doctor is not listening, find another doctor. Doctors are human beings, not minor deities. No one sues them for over prescribing. They only get sued for under prescribing.

On a final note, to be fair, I have two dear friends with complex health issues who are seeing the first neurologist and they think the world of him. They are convinced he saved their lives and they can’t say enough good things about them. I still think the first one was competent. He just wasn’t the right one for us and part of that was his personality (he’s a ‘pat on the head you need to trust me’ type) and I directly and absolutely butted heads with my (I need to know at least as much as you and strive to learn more than you because it’s my problem) personality type. His refusal to listen to me could well be simply because I got his back up. More than one doctor has said I am a difficult patient, or in this case, a difficult wife.

And so that is our update. We are now feeling “back to normal”. Travel outside of Canada is still out of the question due to insurance issues. We are thinking about some camping trips with our travel trailer to places like the Yukon this summer since we are spending the winter here. Wonder of wonders, I am actually enjoying this winter. I think that is because I don’t have to stand and wait for a bus in the extreme cold. If it’s horrible outside I cocoon inside under my electric blanket. I have also been trying winter sports I never had time for when I was working. I discovered I really like curling. The community has been hosting a whole whack of fun events. The farmers are not as busy in winter and folks get sick of being shut inside so fun things tend to happen. We have been to multiple events including one where we won 15 pounds of pickerel. This year is off to a great start!

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Health Recovery Update

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Dick walking at his treadmill desk while speaking to a colleague via Skype. He is now walking one full mile each day and he has lost three inches from his waist. (The painting is one his mother did of him at age 19.)

Last week we drove to Dauphin Manitoba and hubby dearest has his fourth CT scan. He had two while in hospital in June right after his inner right carotid artery dissection with a mild stroke, one Sept 16 and then this new one October 16, exactly one month later as the interventional radiologist wanted. Today we saw our family doctor to hear the news and update on how things are doing.

STABLE!

The CT scan shows no change in the last month. We were hoping to hear healing but we got stable. However stable is good because stable means we continue on the current course. No risky stent procedure unless he develops symptoms. Nothing getting worse. This leaves us in a holding pattern for now. Most watchful waiting, or as the new buzzword is, “active surveillance”.

We also went over the medications my husband is on and the doctor suggested waiting an additional month before trying to remove another of the three high blood pressure medications he was on after leaving the hospital. The worst side effects Dick had (swollen ankles, being sleepy, sudden exhaustion, sudden scary drops in blood pressure) are mostly (not completely) gone but there have been some up and down fluctuations while tracking his blood pressure. The doctor does not want us to change anything until we have a better idea how getting rid of the third blood pressure med is going by giving his bodya chance to settle down before trying to remove the second one. The blood thinners continue at least until one year past the stroke or the artery has healed.

We are also being referred to another neurologist on an elective basis, just a check in so there is a neurologist in the loop, not because we need anything from him. We will be seeing the same doctor who makes regular trips from Winnipeg out to rural communities. This will save us some long drives into either Brandon or Winnipeg. If we do need to go to Winnipeg for stenting we will have a neurologist there who knows what is going on.

There we are. STABLE. Nothing changes. Nothing better but more important nothing worse. Life will go on as it is. Stable is fine by me. Maybe we’ll get healing next time.

Health Update – Carotid Artery Dissection with Pseudoaneurysm

Yesterday we met with the radiological interventionists via telehealth conference. This meant we could have a face to face meeting with the doctor without driving all the way to Winnipeg. It was a weird turn of events for us because years ago it was my husband set up the first ever working Manitoba telehealth link. The meeting went very well and it sure was nice not to have to drive two and a half hours to Winnipeg for it.

We first shared the clinical details of my husband’s condition which is, at the present time is he has no symptoms. The minor stroke symptoms have largely resolved. We are now working to lower the number of blood pressure medications he is on in a slow way while monitoring to make sure the blood pressure does not go back up.

We also got a radiological description of the kind, type and size of the dissection my husband had and why the second CT showed his is “worse” than it was before. We also learned that in some ways the dissection is actually better. This image shows the basic issue we are dealing with.

There is a blood clot sitting where the tear shows the blood running into the space in this image. The mild stroke my husband may have had is probably due to when the tear first happened and that clot was forming. Part of the clot may have got swept up in the bloodstream and ended up lodging in the brain farther up possibly causing a mild stroke. That blood clot has shrunk. That is good news because the fact that it is shrinking means the artery is healing. The bad news is that the size and length of the blister like formation (often called pseudoaneurysm) within the artery wall grew a lot from when he had his first and second CT in hospital. It got both thicker (making the artery narrower) and longer.

The decision we have to make is whether to leave it alone and give it more time to heal or go for a stent. Such stenting is commonly done in cases where there is atherosclerotic plaques in the artery causing reduced blood flood as in this image.

Mayo Clinic Q and A: New treatment to open blocked carotid artery – Mayo Clinic News Network

However this is not the problem my husband has. In fact the CT and other tests he had done show he actually has almost no atherosclerotic plaques. Also because of the size and length of the “blister” he would need to have two stents put in a “pipeline” to fix it.

There is no doubt at all that the pipeline stenting works very well and is an excellent way to repair the damaged artery. The problem is this procedure is relatively high risk. The chances of this procedure causing a catastrophic outcome, like shattering the artery altogether or causing a huge stroke are, depending on what criteria you measure, about 5% (2-10%). In my husband’s particular situation, because of where the “blister” is, in a bendy part of the artery where it is hard to get good CT images, and the basket for catching clots can’t be deployed, we were told it is about 5-10%. There are also long term potential consequences such as the stent plugging up again, or breaking through the artery, and causing more damage over time.

Obviously, if the blood supply to brain is so poor it is causing symptoms, taking that risk is well worth it. Having a stent put in will probably fix it. The risks of the procedure are well worth the potential benefits compared to having not enough blood get to the brain.

What if there are no symptoms? In my husband’s case, he has no symptoms. Neurologically and physically he is perfectly fine. So should he take the risk of stenting or wait and give it more time to heal on its own? The risk is that the “blister” will continue grow and block the artery and cause a crisis down the road. He could die or have a major stroke before we can get to Winnipeg and get a stent put in.

After our discussion we, meaning my husband, the doctor and I, made a considered decision to do what my husband calls “watchful waiting” for now. The doctor wants to try to get a better feel for when and how the “blister” formed. Did it form after he got out of the hospital and now has stopped growing? Is it now healing after the whiplash setback? Has the “blister” been slowly growing the entire time and will it therefore continue to grow? In order answer to this question, we decided to have a fourth CT in two weeks. This is enough time after the first view of the “blister” to ascertain if the blister is growing or healing or staying the same. Until then, as long as there is no reappearance of any of the symptoms of the dissection we do nothing. If any of those symptoms start, we immediately get to the hospital.

After we had that visit, I had some words to use in a search of Pubmed and Google Scholar. I found some review articles on what to do. There just isn’t a lot of good large studies. Most doctors say go right in with the stent and fix it now in a controlled way. This approach is the absolute best for anyone with symptoms. However in people with no symptoms, if you choose to do nothing, the few studies suggest most of the time nothing happens or the artery heals completely or partially. People can walk around for years with that “blister” without a problem.

There is a very strong fear in the medical community that leaving it alone means you will have a high chance of some future uncontrolled catastrophe. Most of the medical literature on why one should go in and stent begins with that assumption. If you do nothing, the patient is going to eventually rupture and have a bad outcome. You must take the risk and do something now.

I then traced back to the original literature that says you must do something now or else. I learned something very important. That literature is based on assumptions that date from before widespread use of CT. Those studies also often mixed up the pseudoaneurysm with full aneurysms. Those studies also included very large defects, many so large you could feel them pulsing in the patient’s neck. Smaller ones are being found with CT no one knew were there before. So the old data on how extremely risky these ‘blisters’ are may not be correct for smaller ones. What few not very good studies there are suggest that these smaller ones usually stay the same, or heal on their own. We just don’t know. There is not enough data.

Doctors are not very good at sitting back and doing nothing. The whole profession revolves around going in and fixing problems. Doctors get sued more often for doing nothing than for doing something and having the procedure go wrong. It is also really hard for a doctor to hear that they risked their patients and caused unnecessary pain and suffering even death when they should have just left well enough alone. It is a good doctor’s worst possible nightmare.

In our case, we discussed the pros and cons. The doctor gave us lots of information. My husband assessed the information and discussed it with me. We asked a lot of questions. We decided to do nothing for now. I think if we had urged the doctor to go ahead and arrange the stenting right away he would have agreed to do that. I am also certain he agreed with our decision to wait. He is a good doctor who practices informed consent and respects my husband’s right to make his own informed decision about his own body. The decision is my husband’s and the consequences are his to live with. Whatever happens, it will not be the doctor’s fault.

Of course our decision may change given the results of the next CT. And, of course, if symptoms appear, the whole equation changes.

This is our decision. Your mileage may vary.

Update: Another article “Experience of a single center in the conservative approach of 20 consecutive cases of asymptomatic extracranial carotid artery aneurysms” from 2018 also supports the watchful waiting approach. In this article the author also points out older literature on why you should not wait is likely not applicable for the reasons I gave. Note this is a small study. More research is needed.

Good Doctors are Wonderful!

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We walked in to see the new family doctor for the second time. It was wonderful! I really like this new family doctor we have. This doctor heard us out, made careful notes and immediately agreed it was time to start getting off all the extra blood pressure meds. We did not have to argue or plead.  We now have a plan to reduce the amlodipine by half for two weeks and then eliminate it completely for two weeks. If his blood pressure stays in a good range we can then try stopping the second of the three drugs, hydrochlorothiazide. If his blood pressure starts back up again, we go in and reevaluate. I can’t say how delighted I am because while the dissection was initially the worst part of all this, the side effects from the drugs have more recently become the worst part of his life.

The order of the reduction which the doctor recommended was different from the one I thought we should move in but we will follow the doctor’s advice since, well, he’s the doctor. He explained why he was recommending the order he did and it made sense. It was immediately apparent he knew a lot more than me. He explained why he thought we need to continue with the blood thinners for three more months and it made sense so we will do that too. Unlike the previous doctor, he told us the blood test results.

Getting rid of the atorvastatin last week has already made a remarkable improvement in our quality of life. It’s not fun living with horrific thigh and back cramps and terrible muscle pain. It’s so hard as a wife to see your husband suffer and be unable to do anything. I am very hopeful that getting rid of at least one of the blood pressure drugs will help with the lack of stamina, dizzy spells, swollen ankles, and getting spots before the eyes on standing. The dog will be happier too if we can begin to enjoy our regular long walks again without the having to stop to sit and rest. As a bonus, we are getting referred to a new neurologist who is not so authoritarian and patriarchal in his patient interactive style. We are assured this one will better suit our personalities. I have no doubt about the skill of the previous doctor but he obviously has real issues with patients who ask questions. What a pleasure to be teated as intelligent adult partners in our care whose opinions and words count.

A good doctor is worth his or her weight in gold. I think we have found a 24K one.

 

 

My Answer to Uncertainty

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While we are on our doctor trip we paused at a store display of spring bulbs. I asked Hubby Dearest to pick a couple of bags to add to our garden. No surprise he picked daffodils. They are his favourite flower not least because he is a bit colour blind but yellow and orange are among the colours he sees well. They also bring back memories of his youth in Oregon where these daffodils bloom in the wild each spring. On one of our trips we drove slowly north up the coast from California to British Columbia and because of the pace we went at, we had weeks and weeks of enjoying wild daffodils.

His second pick was a bit of surprise. He’s never expressed a liking for crocuses. We did make a special point more than once to go find the wild Manitoba variety, a rare but gorgeous treat and the provincial flower.

“They are first through the snow in spring,” he replied. “I like that.”

It is supposed to rain tomorrow. You are supposed to give bulbs a good soaking after planting. The day was lovely, still, warm enough to work in a T shirt. I took great pleasure in planting the bulbs for us both. It was a great stress reliever. Maybe one of us won’t be around in spring to enjoy them but I am assuming we will be. And if one of us isn’t, it will be a nice reminder of the many wonderful things we did get to enjoy together. Everything else is out of our hands and beyond our control so there is no point worrying about it. The Master of the Universe has our back.