Patience and Patients

Image by M. Maggs from Pixabay

Carol and I drove into the parking garage at Swedish First Hill at 9:30am promptly on time and tried to find a parking spot. There wasn’t any on the first few levels and I ended up having to descend down to level E (last level) before a spot was available just before the end. I guess I should have taken that as an omen.

We took the elevator up to the lobby, went through the covid-19 screening procedures and got Carol checked in after just a few minutes. They didn’t want her to keep her cell phone, as they didn’t want to be responsible for trying to keep it safe while she was in surgery, so she handed it off to me when the the nurse from Nuclear Medicine team came down to fetch her.

At that point, she was not going to be anywhere I could see or talk to her until she was in her room following the day’s events. I had filled out a form for the nurses to know how to contact me and so I went home and began waiting for phone calls. The first one came a bit after noon – it was from one of the OR room nurses. She let me know first that Carol was doing fine, but her surgery had been delayed.

Her surgeon had to take a longer time than expected on the previous patient and so she would not be going in until about 1:30 or 2pm. This is exactly the sort of thing I expected to happen and so I wasn’t concerned and tried to settle down to doing useless tasks on my computer or watching TV that I didn’t care about and kept waiting…

Just before 4pm, I got another call from an OR room nurse with an update that the surgery was going very well. Her lymph nodes were negative (more on that momentarily) and that the team of surgeons were able to close the incision on Carol’s left side without needing the plastic surgeon to help, which was very good news!

About 45 minutes later I got the expected call from her surgeon with a few more details. She had taken at least three (possibly four) lymph nodes from Carol’s arm pit that had previously been biopsied for cancer and found that it had traveled there from her breast. She had also managed to definitively pick out the one that had been biopsied and had cancer before as there was a small clip left in that spot as part of the procedure and she was able to locate it and make sure to include that lymph node.

The pathologist had looked at these lymph nodes under the microscope and found no evidence of cancer there at all. This was not totally unexpected, as the scans that Carol had before the surgery couldn’t find any signs of cancer in her lymph nodes, but those scans can only see things down to a certain size. The pathologist puts slices of the lymph nodes under a microscope and looks at them cell-by-cell. That is a much more definitive (and very encouraging!) result.

Another thirty minutes go by and I get another call from the hospital – this one from one of the nurses in the recovery room. He again tells me that Carol is doing well, but that they don’t have a room available for her at the moment and so she’s staying in recovery until one becomes available. He says that she is currently number five on the list to move up to the floor and he was guessing sometime around two hours would be needed since that was what the last patient took to get up to the inpatient floors.

If you were paying attention in the first paragraph of this post, you would have noticed the foreshadowing of this problem. The garage was really crowded. Several others had commented on that fact that I happened to pass by on my way to or from the car. If the garage is crowded, it stands to be that the hospital is also crowded. We know that the surgeon had confirmed with the head of surgery that Carol’s case would continue today, but that they wanted to discharge her as fast as they safely could in order to open up the bed.

Swedish First Hill, like many other hospitals in the US is starting to get hit really hard by an increase in coronavirus patients. While Carol’s case has nothing at all to do with covid-19, her inability to move to a room in a reasonable time frame is a symptom of our inability to flatten the curve of the pandemic. In fact, it’s quite possible that her surgery may have been delayed for days or even weeks because of a lack of available beds if it had been scheduled for next week given the rate of increased infections requiring hospitalization in the Seattle area.

Three hours pass and I’ve heard nothing, so I call the hospital to check. Carol is still in recovery and not in a room, but the switchboard doesn’t really know more information than that. She says that some patients have taken 24 hours to get a room; not exactly what I wanted to hear.

Eventually about four hours after she had been moved to recovery, I finally get a call from Carol herself as she has just been wheeled up into room 1118. She was calling me from the room phone. We have a quick conversation where I tell her what I had heard from the surgeon (more than she was able to pick up when she was just coming up from anesthesia).

The other news is that I need to race down to the hospital right away and bring all of the stuff I had planned to bring tomorrow. Swedish has decided to close the hospital to all visitors effective tomorrow morning due to covid-19 in the communit, so I won’t be able to see her in person after tonight. I quickly pack those items up (I’m quite glad we had planned this out and had stacks already prepared for what to take) and drive down I-5 to get to the hospital again.

I’m able to park on level C this time and after a quick check in with the health screeners and security, I’m cleared to go upstairs to see Carol. I take the elevators up to 11SW (two floors above where Carol stayed when she got her stem cell transplant here 22 years ago) and find her room. It’s a shared room and she has the window bed.

Carol after surgery

As you can tell from the picture, Carol was feeling quite well. She had a “pect block” which is a local anesthetic which will block the pain from the surgery for about 12 hours. We were able to talk for about 15 minutes, but she pushed me out the door since she was well aware that the head floor nurse had bent the rules a bit by letting me come up at all tonight since I wouldn’t be able to come up again.

She does now have her iPhone and iPad, so she’s able to communicate with the outside world. I know she really wants to have me listen in on any visits with the doctors, so she plans to call me when they come in so I can hear the conversations and ask any questions if necessary. It’s a lot harder to be the patient advocate from 20 miles away, but I’ll do the best I can.

In the meantime, would you look at that smile again?

Batter up!

All of the million pre-surgical tests and appointments have now been completed and all that is left is for Carol to show up on time for her surgery tomorrow morning at 9:30AM check in time at Swedish Hospital’s First Hill campus in downtown Seattle.

The latest test result, fresh in from her nose swabs yesterday, is that she remains covid-19 free. It’s not a surprise given how careful both of us are to avoid coming into contact with any potential carriers, but it’s a test that is required before doing any kind of surgery these days.

Carol at the Point No Point light house from our outing this past Saturday.

I know that people are interested in knowing what’s going on and how things went, so I intend to post another blog post tomorrow evening giving you all an update. In the meantime, here’s the planned schedule for the full round of all that should happen tomorrow. Please bear in mind that all times are planned and that the best laid plans of mice and men are usually just about equal.

• 9:30AM – Check in to the hospital. Carol is the only one allowed from here onwards. I’ll have to go home and wait to hear back from the physicians (thanks covid).
• 10:00AM – Check in with Nuclear Medicine clinic.
• 10:30AM – Nuclear medicine injects tracer die for sentinel node biopsy.
• 11:00AM – Check in with surgical team. Get IV going and meet with the anesthesiologist, surgeons and plastic surgeon.
• 12:10PM – Scheduled time for bilateral mastectomy to begin. Each side normally takes about three hours, but Carol’s surgeon has asked another senior doctor to help do the other side since Carol’s surgical case is so complicated, so they should be done in about three hours working together. If the sentinel node biopsy comes back clear, there won’t be any need to take lymph nodes from under her right arm. If it comes back with some cancerous tissue in it, then they will also do an axillary dissection to remove those lymph nodes.
• 3-3:0PM(ish) – Main surgery should be over and the plastic surgeon can begin working to try and close the incision on Carol’s left side which will need extra work because of her previous surgery and radiation 22 years ago.
• 3:30-4PM(ish) – I expect to get a phone call from Carol’s surgeon sometime around this time telling me how things went.
• 4:30-5PM(ish) – Surgery completed and Carol moves to recovery. I expect to get another phone call from Carol’s plastic surgeon telling me how closing the incision went.
• 6:30-7PM(ish) – Carol moves from surgical recovery to normal hospital room. I’ll get another call telling me that she’s now an inpatient and where she is. I am now allowed to go see her again.
• 7-7:30PM(ish) – I arrive at the hospital and check in with the nurses station so I can go see Carol. I’ll probably only stay about one hour this first night as she will need to sleep.
• 9PM-ish. I’ll arrive home and write up a blog post to let you all know how it went. Please bear in mind that this could easily slip a few hours for any number of reasons (many of which have nothing to do with Carol’s surgery). Please be patient and wait for the blog post – I can’t respond to you all individually in the time and details I would like to spend with you.

Count Down

All continues on track for DMX surgery on November 18. It will be a long procedure with three surgeons and lots of others assisting. Biggest concerns are: (1) possibility of blood clots given recent history and taking me off blood thinners for surgery (2) possibility of hematoma (internal bleeding) after surgery because they need to put me back on blood thinners more quickly than they’d like, (3) getting all the remaining cancer out – “clean margins”, and (4) successfully closing the incision and healing on my left side. This area was heavily irradiated in my previous cancer treatment, and irradiated skin often doesn’t heal as well or as quickly as normal skin.

Those concerns translate directly into my prayer and “good energy vibe” requests for all of you who have told me you’ll be thinking about me and praying for me next Wednesday — (1) no blood clots, (2) minimal internal bleeding after surgery, (3) cancer shrinkage from chemo and keytruda allows surgeons to get clean margins, and (4) good closing and healing.

Prayers for Cliff also — it will be a long day waiting for updates. He’ll be waiting at home because the hospital is mostly shut down to visitors and with prep, long surgery, and recovery before I enter the hospital it doesn’t make sense to hang around downtown Seattle. Our son plans to wait with him part of the day.

Only remaining steps to surgery are a Covid-19 test next Monday and a shot on Tuesday.

This week’s procedures and tests all went well. I had an ultrasound of my leg that showed no evidence of the blood clot remaining. This is very good news. I’m still at higher than normal risk of developing them, but still very good news.

Today’s pictures are from a brief tour of the UW arboretum we snuck in yesterday between medical procedures and appointments. Must find something beautiful in each day.

Happy Halloween

This week seemed rather strange as I didn’t have any medical appointments. Not one!

If it weren’t for this little thing called a pandemic, I might have gone out to celebrate! Instead I just worked a little extra and did more around the house than I have been.

The test news we were waiting for was all positive. The stress test indicated my heart is back functioning in a normal range, so the medications are keeping it in a good healing range. Such a relief to know I don’t have serious reduction in heart function.

I didn’t get results from the CT scan until yesterday. When I don’t get test results quickly, I tend to assume the worst, so waiting from the previous Friday until yesterday gave me plenty of time to make up worst-case scenario stories and get discouraged.

So happy when I heard the CT scan indicated the cancer hasn’t spread anywhere else and we can proceed with DMX surgery on November 18!

Next week includes a check-in appointment with my cardiologist, a pre-op visit with the lead surgeon, an appointment with my oncologist and a keytruda treatment.

This weekend, we look forward to visits from our son, our daughter and her dog Freddie. (Son and daughter avoid contact with others for two weeks before they can join our “bubble”)

As always, thank you for all the prayers and good energy vibes you offer on my behalf. I can feel your love and virtual hugs surrounding me.

Happy Halloween.

Waiting…

Bottom Line at the Top for Those who don’t Like Medical Details

• I’m feeling ok, physically, although I’ve been having a few new problems getting heart stuff and blood pressure stable; scans and appointments ongoing
• Still Planning on Double Mastectomy Surgery and 3-4 day hospital stay beginning Nov 18; several procedures prior to the surgery will be required
• I’ve had some short family visits (outside) which has been nice
• Please pray or send good vibes that the cancer hasn’t spread during this little treatment break; wisdom for me and all the medical people involved in my care; and for me to continue healing and have a positive attitude.

A few pictures of family visits…

More Details

When I went for my Keytruda infusion last Friday, they were alarmed at my low blood pressure. So a one hour visit turned into 5 hours while they slowly gave me fluids. They also had me stop taking the diuretic the cardiologist had prescribed to protect my heart from excess fluid. I also hadn’t been drinking enough after my hospitalization, and had been losing weight. So now I’m drinking more and taking my blood pressure at home twice a day. For the most part weight and blood pressure have held steady. Except for…

Thursday I had a stress test to make sure my heart is strong enough for surgery and gain more information about its function after the scare in the hospital. They normally have you exercise on a treadmill to stress the heart, but in my case, they felt it was better to do it chemically. The tracer for the test requires an IV, and the first person couldn’t find a good enough vein, so I now have bruises where she tried, and where they finally got a needle in. The peak of the stress chemical is supposed to occur at 2 minutes, and its normal for your blood pressure to drop a little. Then it’s supposed to recover fairly quickly. In my case, my blood pressure dropped more than 20 points and wasn’t recovering at all. So they injected me with another chemical that is supposed to reverse the effects of the original chemical immediately. Little to no result. So they gave me a second dose of the “reverse” chemical, and finally my blood pressure started creeping up a little but not enough. The PA running the test runs out of the room, grabs an IV pole and some saline, and starts dripping that in me; while telling me that if blood pressure doesn’t recover they will have to send me to the Emergency Room at the hospital (next building over).

I think you could hear my “NOOOOO” to that idea clear over IN the Emergency Room. With saline and some coffee (coffee dilates your blood vessels, which also increases blood pressure) I was able to tell them I no longer felt light-headed and they let me walk out with a walker to meet Cliff, who was waiting in the parking lot. I have no idea what exactly this event means, and I don’t meet with a cardiologist to go over results until week after next.

Yesterday, I had a CT scan. This is primarily to (hopefully) verify that the cancer hasn’t spread to other organs. We don’t have results yet though. If it hasn’t spread, we’ll be on the surgery track, which includes a number of appointments and a procedure to put a filter in the vena cava to protect against blood clots during surgery. The CT scan also typically requires an IV, but thankful one of the wonderful nurses at the oncology center set it up such that I had them access my port before I went for the scan, thus eliminating one or more needle pokes.

And so we keep working, staying home to avoid any chance of me catching covid, flu or anything else prior to surgery, and trying to stay occupied and positive while we wait…

Peace,

Carol

A Good Cup of Coffee…

After so many overlapping health issues, I felt like I probably shouldn’t be eating anything — avoid caffeine, avoid sugar, avoid salt, drink more water, drink less water so you don’t retain it, and nothing tastes good anyway with chemo “metallic mouth”…

But, the cardiologist told me yesterday I could have a cup of coffee!! The cup pictured was purchased on our trip to Charleston and Savannah several years ago. We only use coffee cups at our house that represent fun trips or memories — an idyllic day on Orcas Island, Iceland, and many more. That coffee tasted good!

Much has happened in the last week. My answer to the question “How are you?” is now, “How much time do you have?”

So I’ll divide it into short term and long term. Nearly all the short term news is positive.

I’ve continued to recover very well from last week’s hospitalization, pulmonary embolism, heart issues and shortness of breath. They feel the decrease in heart function I experienced can likely be mostly recovered with the medications I’m on.

I’m only using a very low dose of oxygen when I sleep (never when I’m awake), and I will discontinue that this weekend. My oncologist, cardiologist, surgeon, blood tests and x-ray this week all verified that my lungs are fairly clear of water, my blood counts have mostly recovered from chemo, and I can do light walks and exercise.

My taste buds are recovering from chemo, and I feel so much better getting enough oxygen that I actually feel better than I have in two weeks, although I still need lots of recovery naps. (for the record, dark chocolate continued to taste good throughout!)

Long Term News all centers around the fact that I still have a very aggressive cancer, unfortunately.

I wanted to move to the double mastectomy surgery as soon as possible without giving the cancer any opportunity to grow. However, typically they take you off blood thinners for 72 hours for surgery, to avoid bleeding complications. In my case, doing that before the blood thinner/blood clot situation is more stable would increase risk of the surgery itself quite a bit.

So the surgery is scheduled for Nov 18, several weeks later than I would have hoped. All the experts involved will discuss my case at their weekly “tumor board” meeting next Wednesday. There is some chance the date might be moved up, but I doubt it. There is apparently a filter that will likely be placed in a vein prior to surgery to catch any potential blood clots trying to make their way from my leg to my lungs.

In the meantime, we will likely continue with the immunotherapy drug Keytruda to fight the cancer, and I get to have many, many tests, procedures and appointments to verify my heart is strong enough for surgery, make sure blood thinners and several heart medications continue to do their job and I continue to stabilize and heal from past treatments.

I appreciate all your support more than you can imagine. Specific prayer requests are simple – cancer doesn’t grow; I strengthen for a successful surgery in November.

Peace

Carol

Home from the Hospital, Time For Things To Get Exciting…

We got home from the hospital on Friday and tried to settle in for a couple of days while Carol continued her recovery from her pulmonary embolism and congestive heart failure that was brought on by her chemotherapy treatments. The company that has the contract at the hospital delivered an oxygen concentrator for Carol to use, but it took quite a while for it to show up and I’ll admit that I was starting to get a bit worried before they finally showed up around 7:00pm that night.

By and large, Carol has continued to feel better daily. She only needs to use the supplemental oxygen when she sleeps; and her O2 levels are getting better every day. We’ve been able to dial down the oxygen concentrator from 2 liters to minute down to 1.5 liters per minute and will probably decrease it again to 1 liter per minute tonight. She has been able to take a few short walks around the neighborhood. It’s nothing all that long, but walking a half mile is a whole lot better than she was able to do just a few days ago.

We had her first follow-up appointment yesterday when we met with her oncologist. All the news from him was pretty good – her blood counts were completely normal, so she has recovered from her last chemo session and is at least not neutropenic any longer. He ordered another chest x-ray and let us know later that night that it was nearly clear – all of the opacities (read that as fluid build up) in her lungs had nearly disappeared (that called for a double exclamation point in his text about it).

I think it’s tempting for many people to make the assumption that now that Carol is home from the hospital that things are OK. In fact, things are just about to get more exciting. We have an appointment with her plastic surgeon tomorrow morning followed by appointments with her main surgeon and her cardiologist on Thursday. The goal now is to get Carol into surgery for her double mastectomy as soon as we can.

Now that the chemotherapy has been forced to stop because of Carol’s heart issues, we really want to have the surgery as soon as possible in order to keep the cancer from having any chance to spread. Carol’s physical condition will be part of the gateway for that, but as she’s doing relatively well, her oncologist thinks it will be more likely driven by OR schedules. Hopefully we’ll have a more definitive plan by the end of the week.

As always, we appreciate your thoughts and prayers!

Jailbreak

For the past few days, I’ve had a song stuck in my head. It’s an old Thin Lizzy tune called Jailbreak and the lyrics start off like this:

Tonight there’s gonna be a jailbreak
Somewhere in this town
See me and the boys we don’t like it
So were getting up and going down

Carol and I both have uncle’s named Frank, and the following is a true story about her Uncle Frank (though my Uncle Frank might very well have done the same thing if it had occurred to him).

Frank was in the hospital for something (I don’t recall what) and had had enough. He wanted out, but the powers-that-be weren’t moving fast enough for him. Finally, he just decided to take matters into his own hands and walked out the door of the hospital in his gown, with his behind flapping around in the breeze. He managed to track down a taxi and convince the driver to take him home, even though he had no money or identification.

The taxi driver waited patiently while Frank went inside, got some cash and came back and paid the man. He came back in and asked his wife and daughters to take out the IV he still had in his arm. They politely refused and said he could take out his own damned IV if he wanted it out that bad, which he proceeded to do. It’s one of those stories that is terribly funny in hindsight, but was more than a little frightening at the time.

Carol hadn’t gotten to quite that level of desperation, but making a jailbreak was somewhere in the back of her mind as well as she was tired of being confined to room 317 for the past week. Fortunately, when the doctor who was monitoring her in the hospital stopped by, she agreed to discharge Carol today and the wheels were set in motion to get Carol out of jail, err I mean the hospital.

We’re home now, with about six new prescriptions and she is getting set up with home oxygen as well. Hopefully Carol won’t need it for an extended period of time, but her oxygen levels do still dip when she sleeps and it’s good to have it on hand for nights and naps.

The wheels of medicine don’t stop turning – remember how we’ve said all along that this is a marathon, not a sprint? Carol has multiple appointments already set up with her surgical team next week in anticipation of getting the double mastectomy going as soon as possible as her chemotherapy has ended prematurely and it’s time to get any remaining tumor cells removed from her body as fast as we can get them out.

Tonight there’s gonna be a breakout
Into the city zones
Don’t you dare to try and stop us
No one could for long

A lot calmer day today

I’ve used the analogy of a roller-coaster ride to describe the goings-on of the past few days. It’s hard on the emotions and perhaps even more challenging to your mental frame of mind as you would just like things to settle down a bit. Fortunately, the powers-that-be in the universe seemed to listen to the uproar of prayers and thoughts many of you have been offering up, as slow, steady improvement was the order of the day, with no new momentous changes.

Carol awoke this morning to find that her oncologist had asked for a new chest x-ray. She managed to talk her nurses into postponing it long enough that she could use the facilities and eat some breakfast. Feeling a bit better after that, she talked to her nurse and they agreed to reduce her oxygen down to 2 liters/hr to see how she did. This level worked out pretty well for the most part (it was a bit low when she was napping in the morning), but this is a far cry from the 6 liters/hr that she was on just two days ago.

She had the last of her IV’s removed, though her port is still accessed and available. She is not currently on an IV medications – at this point they are only using her port as a blood draw spot, so that was yet more encouraging signs of progress.

Her oncologist arrived just before lunch with the results of the x-ray in hand. It showed clear improvement (less fluid in her lungs) from when she was admitted on Sunday evening which was a great relief. Her blood test results also showed some improvement. It seems that the trauma of the pulmonary embolism seems to be under control. He was willing to venture that she was on the path to being released tomorrow.

Later in the afternoon, Carol asked her nurse if she could try going without any oxygen for a while. It went OK, with her oxygen saturation dipping a bit (no shock there), but still staying in the low 90% range which was OK, albeit lower than normal. She still would need oxygen if she was asleep, as her oxygen levels drop (as do yours) by about 4-5% which would be too low for safety at that point.

It’s likely she’ll be coming home with some supplemental oxygen (at least for the initial few days). I ordered and received a pulse oximeter and automated blood pressure cuff that all integrate with her iPhone, so it’s easier to track how she is doing over time.

Carol is in good spirits, but a bit tired of being in the hospital (as am I). We’re really hopeful that she will be released tomorrow and I can post one last daily update to that effect. Stay tuned…

Heart Problems, Lungs Progress…

Patrick J. Lynch, medical illustrator. http://patricklynch.net Yale University Center for Advanced Instructional MediaC. Carl Jaffe; MD; cardiologist / CC BY (https://creativecommons.org/licenses/by/2.5)

I entitled yesterday’s update “The roller coaster ride”. Little did I understand at the time that yesterday was just the warmup for today. If yesterday was a roller coaster ride, then today rates a Kingda Ka (the highest, longest, and 2nd fastest roller coaster in the world) in my book.

This is a rather long post, so please forgive my inability to cut things short – so many things happened today and I kind of want to capture it all. So let’s start at the very beginning…

Carol’s oncologist is an extremely hard working guy, and he managed to make his hospital rounds at 6:30-ish in the morning, well before I was able to get to the hospital this morning. When I arrived, Carol reported that he had confirmed that the results of the echocardiogram yesterday showed that she had congestive heart failure.

I ended the last paragraph at that sentence for a reason. If you know and love Carol, how you feel after reading that sentence is probably exactly how I felt when she told me that. I felt devastated…Carol, on the other hand, seemed somewhat happy (more on that in a minute).

This was, unquestionably the low point of the day for me. I was afraid that she wouldn’t get as much potential treatment as she might have been able to in order to halt any cancer progression and furthermore afraid that her heart issues may be further life threatening, though I didn’t understand by how much.

With the diagnosis of CHF, chemotherapy can’t continue. Carol had already been steeling herself to try and make exactly that decision – she was so exhausted of trying to deal with the chemotherapy side effects of fatigue that she was ready to ask for chemotherapy to stop. As she puts it, “I am so tired of trying to pull up enough energy to be able to get up out of bed to pee and take my meds – I wonder if I can crawl rather than walk to get there.” Extreme fatigue is something that most people (including me) just can’t understand unless you’ve been there (and you really, really don’t want to be there). The fact that she couldn’t get any more chemotherapy was just fine by her.

When I talked to Carol, she was positively beaming about the end of chemotherapy. She had basically already made up her mind that she didn’t want any more chemotherapy because of how bad it made her feel and was trying to figure out how to tell that to the doctor and me. Listening to her again, I tried to understand and come to grips with exactly how hard this is to deal with. It’s not just hard, it’s way beyond that – an order of magnitude more challenging. What neither of us know (or will ever know) is how much of the difficulties are due to the chemotherapy directly, and how much of it is due to the pulmonary embolism, which likely has been a cause of her fatigue over the past month. To be clear, the pulmonary embolism was also caused by the chemotherapy, so it’s all related to these treatments that are trying to save her life one way or another.

The other implication of the end of chemotherapy is that her impending double mastectomy is likely to be moved up in time. We already had a consult scheduled with a plastic surgeon for next week and her main surgeon for the week after that. We’ll see if those can get moved up in time as soon as Carol gets out of the hospital – it’s likely that she’ll have surgery in the next 2-3 weeks rather than towards the end of November which was the original schedule. Her oncologist did note that the scans that she has had while in the hospital showed that there is a layer of fat tissue between the tumor and her chest wall (which wasn’t totally apparent before chemotherapy), so that should make getting clean margins on the surgery a better bet, which was the whole point of doing chemotherapy first.

I spent much of the morning googling what “congestive heart failure (CHF)” really meant and what the treatments would be along with side effects and drug interactions might be a problem. While I was certainly aware of the term (my grandfather had CHF and eventually died from heart failure), I came to realize that all it really meant was that her heart wasn’t working as efficiently as it should. Also, there are a lot of degrees of CHF and at this point, we had not been told how bad Carol’s was. Mild CHF is something people may live with for a long time where as severe CHF is more of an end-of-life type of thing. We didn’t know what Carol’s level was, but from what we had been told so far, I was hoping that it was much closer to the mild spectrum.

As the day progressed, Carol’s oxygen levels were essentially normal (albeit on 5 liters of oxygen per hour), which was a very good thing. Carol was sitting in a regular chair, not just her hospital bed and was feeling much better both about not just being in the hospital bad and not having to have more chemotherapy on the horizon. She was, however, starting to get tired and had decided to take a nap in the mid morning when all of a sudden a new person showed up.

It turned out to be a physical therapist. He wasn’t really all that interested in letting Carol sleep (physical therapist aren’t called “physical torture-ists” without reason after all). He was there to see how well she was able to balance when standing up and also to see how well she would do when she wasn’t on supplemental oxygen. He was particularly interested in seeing how she did when she was tired, so it was perfect timing from his perspective.

It was at that point, in my opinion, everything that was happening today started to go better. While she really didn’t want to, Carol agreed to go through his battery of tests (none of which hurt, to be fair). She passed the balance tests with flying colors, even when all she really wanted to do was lie down and sleep. The real important test for me was the oxygen recovery test that he did though.

When she was on oxygen (5 liters/hr is a lot), if she did some marching in place, she didn’t see her oxygen saturation drop below about 92%. When she stopped exercising, it quickly climbed back up to the upper 95+% range. He repeated the test without oxygen and we saw that her oxygen levels would dip into the upper 80% range when she was exercising, but more importantly that she would quickly get back to the mid-90% range after stopping.

What that really meant was that she probably didn’t need any oxygen when she was just sitting there awake and not exercising, which was a tremendous feeling. The PT left us and we were feeling a lot better about how her lungs were responding to the treatments (and Carol was able to get her morning nap in finally!!!).

After she woke up, her charge nurse was willing to change her oxygen from 5 liters per hour down to 3 liters per hour. Her oxygen levels really didn’t dip at all and stayed pretty high for the rest of the day, which was great to see. He was also happy to pull out one of the extra IV’s she had since she is basically down to only one IV medication (heparin drip) at this point in time. Having two IVs plus a port (which is what is actually in use) was a bit silly. Carol was quite happy to have her hand free again.

During the afternoon, Carol was able to talk to her mom, sister and brother-in-law, and her kids (twice) today. She also talked to my sister later this evening after I had left for the day. The conversations were helpful (albeit short) and I know it was encouraging for those folks to get a chance to see her and not just listen to me blab on about how things were going. It also really lifted Carol’s spirits as well.

We got visits from a physician’s assistant (and later the main doctor) associated with the cardiology team to talk about some of the medicines that Carol was now getting for her heart and what the diagnosis of congestive heart failure really meant. Carol does have a mild case of CHF which was what I had kind of hoped for and gleaned from the test numbers that I had heard, and there is some hope that her heart will repair itself to an extent with a case that is as mild as hers is.

She won’t be entering any half-marathons after being discharged, but she does have a reasonable hope to live a more or less normal life after this. She had three medicines added to the list – lasix (a diuretic), Coreg (a beta-blocker) and Lisinopril (an ACE-inhibitor). She is on small doses of all of them and they are basically standard treatment drugs for people with mild CHF.

At some point in the not-to-distant future, the cardiologist will want Carol to do a stress test in order to make sure that the issues that they see with CHF are 100% due to the chemotherapy and and not due to other blocked arteries in her heart. That won’t happen until later though – she has to get through this (and likely her double mastectomy) first.

The final news of the day came late in the afternoon when her charge nurse came in and let Carol know that the doctors had ordered yet another new drug – Xarelto. This is the drug they have decided to have her use as a blood thinner and it seems to have many fewer side effects than the older drugs like warfarin (Coumadin). It’s a pill and she took the first one tonight. It’s expected that she’ll end up getting off of the heparin IV sometime tomorrow once the Xarelto has been in her bloodstream long enough to be effective.

So while the beginning of the day was kind of a downer with the diagnosis of CHF; things seemed much better by the end of the day. The CHF is a mild case and she should be able to live a normal life; the amount of oxygen Carol was needing to keep her SpO2 levels up was down substantially, and they are on track to getting her off of the last IV medicine. What that means is that getting discharged from the hospital may not be too far off – possibly tomorrow or more likely on Friday. Either way, we’ll be glad to be out.

As always, we really appreciate all of your thoughts and prayers. While we may not have the time to respond to you all, every comment is read and cherished; every thought and prayer means more than you can possibly understand.