With such sadness I write that my mother, Margaret Louise Paulson has passed away in the early hours of September 19, 2013. She leaves behind so many loved ones and friends that knew her happiness, enthusiasm and love. Margaret will be very missed by so many.
I love you Mom,
Tutu
Trying to do my best to post on Margie's progress weekly, but I just can't keep up with all of her medical shenanigans!
So, hitting on the points:
-She's in between chemotherapy treatments, so her immune system, when returning home last week was bottomed out, opening her up to infection.
-Her week was going pretty well, but by Saturday not so well.
-To the ER on saturday and then admitted to hospital
-Once cultures all came back, determined that bronchial infection had moved into her lungs.
-Plenty of antibiotics prescribed by monday.
-Still in hospital as of this morning, likely will stay through next round of chemo.
-On oxygen now to assist with breathing, as her lungs are not happy about breathing like us mortals.
Deborah is there now, as are Michael and Robert- back and forth from the Island...
Will post again today as Deborah just reported that they "are working on getting the tube out"
all for now,
Kathleen
Yes, as in positives...
I'm up on the Island again today (this is Kathleen writing)
Margie was released from the hospital yesterday, having spent six days checked in, a new Hickman Catheter installed in her chest, and administered her first rounds of chemotherapy for what is being called "Leukemia of the soft tissue"
The Hickman Catheter is a fascinating device as it is a portal of sorts and most direct line to the heart.
Literally, an opening is created right on the chest which feed into a particular vein in the heart. From the outside, what we see is a circular bandage about 1" diameter, with two I.V. lines coming off. When Margie goes for procedures or blood draws or chemo, the medical staff just hooks up to one of the lines to put something in or take something out. It eliminates the need for the IV lines in and out of the arms or legs for a patient who is having extended medical treatment.
My admiration goes to Dr. Hickman, (living) for the invention of this device and my apologies for likely describing its functions so poorly.
So, I arrived yesterday, to the boat and picked up by Robert that had just come from the pharmacy where he dropped a cool $450 on 3 prescriptions for one month doses.
Cancer is expensive.
They'd just arrived back home on the boat prior to mine, so much unpacking and sorting from the hospital was necessary.
Margie has several new features in the house, one being a chair that climbs the stairs- she sits on it and rides it up to the second floor. Blogger has changed many of it's features and buttons, so as soon as I unravel a few of these mysteries of how to get my pics and videos from my phone to the blog, I will post. I did enable the comments area below, so feel free to chime in now and onward.
The second positive development is that she is using a walker around the house and it is quiet the change for the good. The walker is giving her the needed stability for being mobile and that confidence as well as good physical therapy is really making a difference.
She was very positive last night as we concluded the evening with a nice walk around the deck a few times, watering plants and some quality time on her lung/exhaler gizmo, which unfortunately I have no idea what it's called but its essentially it's a work out for her depleted lung abilities.
If our resident expert Cathy would like to chime in on the comment section about this, I would love the input!
Last night we had a visit and delivery from Walgreens whom will be supplying Margie with all of her Hickman Catheter needs. Yes, as lovely as the Hickmans attributes are, it is not a self maintaining device.
Chemotherapy basically wipes out the bodies natural immune system which opens the body up for infection. The Hickman, like I explained, is a direct portal to the heart. So, alas, it is imperative to keep it not only operational but bacteria free as to never allow for the introduction of infection.
Did that sound important? I hope so, cause it is vitally important.
So, after dropping a cool $700 on one month of cleaning supplies for the Cathetar, today we'll get a visit from the nurse to go over the twice a day procedures of keeping the portal happy, healthy and infection free. Yipee!
So, loves, I'll be posting whilst up for my visit and beyond. Feel free to comment if you'd like. Margie absolutely adores your input and looks forward to her continued celebrity status as the most positive cancer patient on the planet. As you may have figured out, I think she's amazing.
XO,
Kathleen
Dear Leukemia,
you are so mysterious! I thought the nature of this cancer, by definition is that its blood. As in, all through the body...uh, where blood goes?
But no, you little minx, you show up this time as "masses" showing up in soft tissue like legs. What's the deal with that?
So, this week it's chemotherapy for you, you little bugger and then next week off, then back to the hospital again for another week of hitting you hard.
Hospital stays have their upsides: I can boss around (nicely) the staff here so I know everything that's going on and that way the people that are coming in and out of my room know who's in charge.
I order food off the daily menu.
Ok, that was a short list for hospital upsides, but true to form, I'm keeping a positive outlook and know that in the end, cancer doesn't run my life.
This week here I am treating it as kind of a "lock down" week. That means I mean business as they're even waking me up at 2am for my chemo and it not only takes a lot of energy to do this, but I have to focus on getting well too.
Chemo can really kick ass, so the name of the game is focus...
So, Leuk, we'll be seeing you...
oh, and good riddance.
Margie
yes, I know, there's no comment area...yet. I am having a difficult time getting it to go back to comments...but I will, I promise. Margie knows the well wishes are there...just floating about in the universe, rest assured.
So, this week, some random happenings in the world of a houseguest that visited, wouldn't leave, finally left and now came back, uh, uninvited. (There are so many things wrong with that sentence, but I am just leaving it all in.) train of thought rules.
In not particular order:
- Appointment with the Oncologist this week: Margies now got another bump, mass on the inside of her right leg, presumably to match the one that is on it's way out that took up residency on the left leg.
-An appointment at the SCCA today!! I am very excited to hear about what their "plan" might entail.
-A phone call from a doctor in Europe that is interested in the case. Here's how this went down as relayed to me by Margie:
Margie: Some doctor called me to ask about my treatment. She was calling from Europe.
K: A doctor in Europe? Where? which country?
M: I don't know. She had a very thick accent.
K: What did she ask you about?
M: About the leukemia. She's interested in it and may want to talk more about it with me.
K: Do you know what hospital she's with? How did she get your name or information?
M: I don't know. She just called.
K:How did she hear about you?
M: I'm not sure, but she's interested in my Leukemia.
K: aren't we all.
In summary, some doctor in Europe called Margie.
I don't know about you, but I'm packing my bags.
So, this week: kind of short and sweet. She's walking a little better, but with the addition of another mass on the other leg, that's not a positive development.
I'll post again when I'm feeling less snarky and see if we can't put a little kick in our steps, shall we?
xo,
K
Or as we like to say, "get your arse out of bed and keep moving!"
Living in a forward direction.
Some terrifically positive news from this weeks doctors appointments:
- At the Oncologists, Margie was told that there ARE NO LEUKEMIC CELLS IN THE SPINE.
can I say that louder? That's huge is what that is.
-At the physical therapists, Margie worked with the therapists on walking and regaining natural mobility to that left leg that has been riddled with a leukemic mass behind the knee.
-Back at the Oncologists, treatment discussions which included options: three of them.
1. Don't do anything. (watch and wait)
2. Start Chemotherapy (then refer to no. 1 to see how she responds )
3. Turn all her medical information and current condition over to the Seattle Cancer Care Alliance and in turn The Fred Hutchinson Cancer Research Hospital and find out if she is a candidate for current treatment and trials for Acute Myloid Leukemia.
Options? Choices? Me thinks not. Here's a hint:
The Hutch (Hutchinson) CURED Margie of cancer once through the use of a stem cell transplant.
Speaking as one of her four children, this is a no brainer.
Living in a forward direction. Yes, please.
I love you mom.
(this post written by Kathleen, Margies youngest and likely brattiest child)
We've all seen that movie. The good one that left us wanting more. Or the bad one that surprised us that it even got as far as it did.
And then the sequel comes out.
Yes, a poor attempt at metaphor: Cancer as sequel. My first thought when Margie got the diagnosis: Really? Does anyone deserve cancer a second time?! Yes, I know, no one deserves it a first time. Most of us, some of us have had things happen to us or to loved ones that are not "deserved" but stuff comes our way and we deal with the cards we are dealt.
She dealt. Six years ago. But now. Again.
I have to stop harping on this, I know. I've been mulling it over for the last three weeks and it still won't settle in. Cancer a second time for someone that is now depleted because of Cancer's first visit is just so...wrong.
But I'm the original author of this blog and as the universally acknowledged truth of blogs go: my blog, my opinion. If you don't want to read it...shove off.
Ok.....That up there is my moment of frustration. Just putting it out to the universe cause it's sure not doing me any benefit to internalize. Done. Finished. Moving on....
YESTERDAY
I drove Margie over to Virginia Mason to get her radiation on the left leg, plus a bonus dermatology appointment for an annual mole patrol. (p.s. if you're part of this family, consider getting your many moles checked. Oh, and use that spf. Just sayin)
Dad (Robert) has been doing the drive back and forth for twelve days and as it gets pretty much mind numbingly tedious , I thought he deserved a little time off so I took over the driving yesterday and will again today.
(some of my writing is going to be a bit of catch up and background so as to fill in those of you not familiar with the colloquialisms of island living or the traveling to and fro required when one is being treated for cancer and how it's so not very convenient. ever.
Margie and I drove down to the ferry terminal, got in line for a 10:20 boat. A little confusion at the toll booth: senior? uh, wha? But I'm the baby of the family.... She was talking about Margie, but as my sensitivity to all things AARP is at a hyper sensitive level, I have a hair-trigger reaction to being accused of actually aging.
Once in line with the hoards of cars waiting for the boat, I was disappointed to find out that it wouldn't be necessary to flash our "medical boarding" pass that Margie mentioned in the previous post.
Thank you Colleen! What a huge relief! If one is unlucky enough to be part of the daily commuter experience on the island, you get to experience first hand not being able to board your vessel at the preferred crossing time, and having to wait one or two hours for the next one. For someone traveling back and forth to a hospital, already flipping tired out from it all, that can be just a wee glimpse o' hell.
Of course, I'd like the medical boarding pass to include one of those nifty sirens that slap onto the top of the car and sing out some "wee- woo" warning. Think french flick, circa 1979.
Oh, but as mere mortals, we found our spot in line, turned off the engine and amused ourselves by plugging into the cigarette lighter all usb connectors that were attached to some device or another and speculating whether that they did indeed drain the battery whilst the car was turned off.
Gawd, if you've made it this far....
ok, ok, ferry crossing, dock in seattle, up the hill, blah, blah, blah.
First up: dermatology. Oh, but look: we are one and a half hours early for the appointment! How did that happen? I have no idea!
But we make the most of it by zipping into the "medical spa" nestled into the dermatology area. Naturally, Margie and I screech to a halt (I'm pushing her in a wheel chair, so there is actual screeching involved) right in front of a display of Dermalogica brand products, all promising anti-aging with the tempting sub-category of "resurfacing"
sign me up!!
A couple hundred dollars later, the nurse comes in and tells us that the doctor can take Margie early!
Yipee! Save me from sinking another several hundred dollars into big promises beauty products!
I snatch up my wee bag of liquid sandpaper, er, resurfacing creams, and off we go to see about the moles!
Luckily, Margie has only a tiny suspicious spot, so we leave with just a tiny surface scrape and a bandaid to cover it. Naturally, I want the Doc to give me a freebie consult- can't you just burn this thingy over here off, I'm her daughter, yes, that's a melanoma scar on my shoulder, but no-go. He's all business and no games for me. Poo. note to self: schedule my mole patrol.
Virginia Mason Hospital, like many big city hospitals, is a wonderfully complex maze of buildings and sky bridges, hallways and corridors, lobbies and parking garages. Our task was to get from Dermatology on the 9th of the Lubowski (?) corridor, over the sky bridge in another wing, to the oncology floor and then on to the basement (shouldn't they just call it the dungeon?) for radiology. (how appropriate)
Naturally, thanks to the zippy staff in Dermatology, we have time on our hands. And what better way to burn time then find our way to the gift shop!
But even better, we make good use of Margies wheel chair: I propel the wheel chair toward the elevator button and her challenge is to push the button whilst zipping by, if she misses, we have to loop around in a huge, dizzying circle and try again. Weeeee!
Ever had to spend the day in a hospital? yes? then you understand.
That concludes part one of our adventures....I have to get ready to get to the ferry! Haha!
xo
kathleen
(this post written by Kathleen as told by Margie) Kathleen will italicize anything she wants to say....
Of all the things that could have happened, here it is again. I was cured, I had every reinforcement I could hope for and two weeks ago, re-diagnosed with leukemia.
And now it's back to the blog and my wonderful life with cancer.
( I wanted to write goddamm cancer, but mom tells me this: when Bill Szabo wanted to say expletives like s.o.b. , he'd say "stone of a peach"....I say I'm allowed to say what I want about cancer and trust me on this, bill would agree with me.)
Back in february of this year, I wanted to continue my almost daily workouts at the gym with weight lifting, yoga, treadmill and stretching. I was starting to peter out. I didn't feel like I could make those daily trips to the gym.
My energy was getting lower and lower and felt weaker by the day. I was having pain in my left knee, leg and foot. I couldn't walk several blocks, always just too tired. I started a series of visits to the family doctor and was given a variety of possible causes, including sciatica.
Three trips to the emergency room due to knee and leg pain, doppler tests, and it was concluded that I had a blood clot behind my knee. I was started on blood thinners, giving myself twice daily heparin injections in my abdomen for two weeks before starting on coumadin to further thin my blood.
Nothing was helping. My knee was getting larger, and the leg and foot continued to swell until very hard.
After seeing my pulmonary doctor, he examined my knee and leg and declared that this was not a blood clot and sent me for an MRI. the MRI showed clear evidence of a leukemic mass or tumor that was putting pressure on blood vessels and nerves.
Unfortunately, weeks turned into months as doctors looked at my symptoms and said it could be any number of things.
The MRI gave firm evidence of a firm diagnosis of a mass of isolated leukemic cells. I saw my oncologist then who has been with me since 2006, he immediately prescribed radiation to the left knee and leg and a bone marrow biopsy two weeks post diagnosis.
As of now, I don't have the results of the biopsy yet. The oncologist is planning for a lumbar puncture but has not said when.
I have been in touch with the SCCA, (Seattle Cancer Care Alliance) who oversaw my stem cell transplant of 2007. The SCCA is waiting and will receive all my test results from my oncologist. I remain a patient of the SCCA.
I am confident that I will benefit from the expertise and the knowledge that the SCCA has in the treatment of leukemia. At this time, I am nearing completion of twelve days of localized radiation to my left lower extremity.
My oncologist also referred me to a neurologist because I have a great deal of trouble walking and keeping my balance. I had a very satisfying visit with this doctor today, July 16th.
He believes that the symptoms I have on the balance and the poor walking can be attributed to the pressure on the nerve, but there may be no damage to that nerve. Once the pressure is relieved (which is the purpose of the radiation) to shrink the tumor, it will take many weeks for the therapeutic changes to become apparent. There are important changes already apparent: some reduced swelling and hardness of the calf, and slightly reduced pain.
Its taken a lot of stamina to take the ferry to Seattle every day for the last two weeks, but I have been very much helped by a medical pass where we are able to drive straight onto any boat, without a possible 1 to 2 hour wait.
It has been quite a shock for our whole family because we thought that this was well behind us after seven years.
Our children have been here to spend time with us, and will be continuing as much as they are able to be here during this time period of many questions as to my total condition. But, we will always look forward to a happy outcome, especially with their love and support.
I want to thank Kathleen for pushing me to cooperate with her for continuing this blog. I know that there are many of you that want information about what is happening with me and to be kept up to date on developments. I dreaded having to verbalize for this blog, what the last five months have been, but I always believe there is hope and I believe that God is watching over our entire family.
That includes our four grandsons. Thank you, Kathleen.
(I will be posting every week or as needed to keep everyone abreast of what the latest developments are on Margie's condition.)
Just learning more about this eye thing she's contending with so I thought I'd update: In regard to the cells that I mentioned: this is one of the possible side effects of radiation and chemo- affecting the eyes, so it's not so much that she has a temporary condition or infection but that this is a result of her treatment, so we really don't know if/when her eyes will function "normally" just as she has neuropathy in her feet. Recovery is possible, but there isn't a magic pill that's going to make it go away. It's been about 10 days since her eye's were diagnosed, and she says they're better, but it's an ongoing irritation throughout the day, adding drops every 30 to 60 minutes, etc.
will post more before I go back to SF, all for now.
K
Since Margie hasn't written since her May flowers post, I'm visiting for a week or more and thought I'd just jump in and let you know how the heck she's doing.
In a word: really good. That's two words, but still captures the feeling.
Currently she's dealing with an bit of a nuisance with her eyes: as a result of the radiation to her brain/head, it's affected her eyes in so far as the lubrication of them. We've all got two main lubrication sources with our eyes. The ducts that make them tear and another area that controls the 24 hours lubrication of the eyes. well, her cells in this department (the 24 hour one) haven't been working correctly due to the previously mentioned radiation and so she's had to jump through some hoops what with discomfort, pain, hurting eyeballs, figuring out that an ordinary opthomologist wouldn't suffice and ended up at the hutch last week with a doc that deals with the eyes of transplant patients such as Margie. If you'll pardon the pun,
BULLSEYE! By sunday her eyes were feeling much better and on the road to recovery. They're making a little progress every day. Yesterday she said that if normal were one and bad were 10, she's come to about a four, so that's great.
Overall, she seems terrific. Her day starts with pre-breakfast meds (about 6) then a dessert of about 8 more, comprised of transplant specific drugs and vitamins. The day ends with the same regime. I would describe her energy as steady and consistent, but ready for a nap in the afternoon as well as bed time at night. Her body is at an ideal weight for her height, so she looks fabulously perfect in her clothes. Dissapointingly, her hair has not come back to the pre-leukemia lenghth, luster and fullness that she's enjoyed her entire life, but luckily has a wardrobe of wigs with which she can cover her head.
Some science fiction type results of the stem cell transplant: her nail beds and finger nails have morphed completely into a whole different set of hands. Weirdest thing- her nails have always been sort of "stumpy" if you will and never could grow the coveted 10 nice finger nails. Now, the whole enchilada of the nail bed and nail has completely changed and she's got this long, perfect oval specimins of nail perfection!
Another amazing post transplant side affect: a reduction of some of the wrinkles on her face and chest!! Sign me up already!
I hope this gives you a small overview of how Margies adventure with leukemia is going.
All is well and she's doing great.
I can't believe how much better I feel now that I am a couple of weeks away from the cylosporin. Even the small dose I was on at the end of the taper still gave me the exhusted feeling. I'm still taking some two hr naps most days but I feel much more myself and able to focus on things like mothers day cards and the ordinary events of day to day living. The drug was also elevating my blood pressure so I stopped the blood pressure med but my bp started to go up again. I am taking the bp every day and have been in touch with the Dr. who said to monitor it and take the med accordingly so I am. I am taking the bp med again started with a 25mg instead of the 50mg I had been taking but the bp kept going up- 150/90 so I went back to the 50mg.
I must say my caregiver, my husband, makes life supremly comfortable for me. He fixes breakfast every morning, does the dishes laundry grocery shopping vacumming and sets out my morning and evening meds including recording everything. So every time were at the Dr.S, monthly now, and he asks what medications are you on? He just whips out his up to the hour list and I don't have to remember or say anything.
May flowers and getting back on the treadmill is my program now. Fortunatly I was offered the use of a treadmill in my neighborhood, just accross the street. I would love to return to the gym but I am afraid of the chance of infection. So this will fill the bill. I know I have lost muscle mass as I pretty much stopped exercising the last four months- I'm ashamed to say it- because I know totally it's importance and I've mostly had a consistent exercise program in the past. In fact I got a reward- tangible proof- of my efforts when I had the test to evauluate lung capacity. The technition showed me on the graph when you exhale with all your might, the graph will just show a small hill if your abdomenals are weak, but if your abs are strong the graph will show a high spike and mine was way up there even tho I hadn't done situps for several months. God that was good to hear and see! It
almost made that miserable test worth it.
Love to all, Margie
Yes, I had a good visit. My dr is a very upbeat person, and starts out the visit saying " you look beautiful as always and your doing so WELL!!! how is that for a boost?
One disappointment is I am being treated for a urinary infection for the third time in five or six weeks-like he said, it probably never went away but the good-great news is that yesterday was my last day on the immunsupprent drug cyclosporin. Over the last several months they took me gradually from 200-250 mg a day down to 25mg and that ended yesterday. He also said my immune system will grow quickly without the suppression and his hope is that will take care of a another recurrence of the urinary infection in fact, he said I would be my old self by August! I was so thrilled to hear that I didn't know if another year would have to be spent vulnerable to infection. Presumably, as this immunosupprant has decreased, the immune system has been growing, and I'm not starting from zero. One side effect of the drug is it raises blood pressure so I have had to be on b/p medication to keep it down. It was 128/82 at the office to I'll have to start taking my own b/p to monitor it. He said I could stop it -whenever.
We are getting hail in mid April.
I know I am finally getting more energy back. It's nothing to write home about but I rarely have the weird-to- my-core exhausted feeling,like can I make it to the bed. and then after sleeping two hours I'd feel exactly the same was when I woke up!
I sleep during the day two hours, yesterday it was three. I am so thankful that this is what I can focus on- doing what feels best for me. So many have obligations that would make focusing on yourself difficult and energy draining when there is none to spare.
I have greatly enjoyed reading Eckhart Tolle's A New Earth and following he and Oprah's podcast discussion of the book. The essesce of it is how to live in the present moment and what could be more theraputic for someone with a serious diagnosis but for all to better deal with difficulty that comes in our lives.
Love to all M
Last day on antibiotics yesterday and I feel soooo much better. I am not sure how a urinary track infection got in my blood,I'll talk to the Dr. about it when I see him on April 16th. My temp dissapeared three days after I started the right antibiotic, but I am continuing to monitor it daily for a while.
I walked today and did my Hutch exercises while I watched a movie. The two weeks with the infection did do a number on me- wiped me out. Now I feel much better, Still can have nice 2 hour naps during the day tho, It is a good feeling to be able to do that. Sort of care free.
This coming week is a difficult one as April 9th is the five year anniversary of the loss of our three month old grandchild, Noah Robert who was born with a very serious congenital heart defect. The Dr's didn't know how long he would live so
his parents, five year old brother and us set the goal that Noah would have the happiest babyhood we could give him. That meant it had to start with us- we had to be happy, be joyous, celebrate his being, marvel at his smile which started early and hold him incessently, oh yes, Noah spent his entire life at home. He had many friends come over,with baby gifts, flowers and food and so many desserts. Noah had a birthday party every week with cake. His grampa gave him his first taste of chocolate cake. He saw the Pacific Ocean, He heard music, admired his brothers favorite toys. Father continued on to work each day to maintain the family. Noah had to eat frequently so I did night duty so Mother could be rested in the morning. It was five years ago but it feels like now. I guess that is the mystery we don't understand. How someone can be here and then not be here when we feel ourselves and others to be forever.
love to all, M
Everything seems to be fine now but I had to be started on antibiotics in what turned out to be a urinary tract infection that also went to my blood. So Sunday nite I had a 101 temp I went locally to get blood cultures done the next day and threw in a urinalysis on my own. anyway I was started on one broad sprectrem antibiotic to try and cover me till the final cultures were in-3days-it turned out it was not the right drug so I was switched to one that would be effective. The same bacteria in my urine was in my blood so they thing that was the source.
The hardest part of all this was it has been pounded into my head by endless medical people that you must go to the hospital immeadiatly if you find your self having a temp whitch were happening for 2 night during the hours the ferry is not running to Seattle. But my Dr. helped me by saying take your temp at bedtime, then in the morning if it is not down then call me- ferries would be running then- so I was able to go to bed and not obsess and keep taking my temp. So that felt good. In the morning it was down and the cultures were completed that day and I DIDN'T HAVE TO GO TO THE HOSPITAL.
love to all, M
It was our infirmities that he bore,our sufferings that he endured while we thought of him as stricken, as one smitten by God and afflicted. But he was pierced for our offenses, crushed for our sins.
All good news, everything is negative in fact they didn't do th flow part of the bx because it wasn't indicated. The other great thing is I had the Hickman catheter in my chest taken out as I'll only have blood draws monthly that should be doable. It is an adjustment, I have lived with it since June 06. Flushing it daily, drsg changes, changeing the caps at the end weekly. You get attached to things. I was so attached it took the surgeon 45 min to be able to remove it, as he said if your don't reject it it becomes part of you. But it always functioned perfectly and considering I had blood draws most every day for 6 months on top of about 20 blood/product transfusions.oh, and the transplant which came in the form of a transfusion. The Hickman meant I didn't have any worry or a second of pain or watching my veins being distroyed and wondering if one could be found next time. I saw a patient go through that on dialysis, his last line fell out. He and those at his bedside knew what it meant- I stepped out of the room and cried.
It is hailing now. Thankyou for checking the blog, thankyou for your thoughts,concern and prayers Love to all, M
