living her best life: #53…feeling run over

…by a Mac Truck! 

Hi [hugmamma]…

Don’t know if you’ve gotten any of my text responses…thought I’d just send a quick update.

They say I’m doing well and I’m right where I should be. Even so, I still feel like crap. One doc described it as being hit by a Mac Truck, and then the truck backs over you and finally dumps its load on you.

That about sums it up.

There are moments in between when I feel somewhat normal, but those moments  don’t last very long.

Today is Day 8. I won’t go back and describe the past few days because I’m concentrating on moving forward and I’d rather not relive the past…not yet anyway.

I’m at the point where my body is trying to replace platelets so I can be weaned off the antibiotics, and anti-viral and anti-fungal meds. I think that’s right. I just know my body has to start fighting back on its own now.

That’s all for now…going back to rest.

I love you.

Pat

…and we all love you and brad…and continue to pray for you both.

………hugmamma.

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living her best life: #51…a little tough

The easy banter has subsided. A more somber tone replaces Pat’s heretofore lightheartedness. Can’t say I blame her. In fact, how she’s remained so cool, calm and collected until now is something I can’t fathom. I’m sure most of us would give in to a little belly-aching now and then. Not Pat. The woman doesn’t know belly-aching. The day they left us on their way to Minnesota, Brad told me that, except for a few brief moments of frustration, Pat never complains. Doesn’t surprise me.

Ask any of the so-called “outlaws.” Our spouses, all siblings, are almost saint-like. We “outlaws” keep our better-halves anchored to earth with our very human failings. We like to think of ourselves as…merry-makers. We’re always…always…making merry.

On 7/17, Pat texted…Hi [hugmamma]…I think I’m doing pretty good…considering. Just tired most of the time, taking things now day by day, moment by moment. Feel pretty groggy for the better part of the day, trying to eat and drink more but it’s hard. Trying to also manage my meds…which is the toughest part. Doc says I’m doing good but they still talk about the low point being 12 days out as my counts continue to drop. So I don’t know if feeling good at one point in the day is a turning point or just a good moment to be embraced while it lasts. All I know is I can’t wait to go home. Love to you and [my brother].

On 7/18, yesterday, Pat texted. 

Hi [hugmamma]…thought I’d send a quick update…haven’t felt much like posting or journaling lately. Today is Day +5. I take a blood test every morning and meet with a nurse and doctor to go over any problems, side effects etc. I also go in morning and night to get anti-nausea meds through my central line.

Luckily Dr. Gertz has this month’s rotation so I see him often. According to him I’m doing as well as can be expected. Although now we have to watch even closer for any signs of infection. I’m basically at the half way point to the bottom…another 5-6 days and I should be at the turning point when my stem cells will start taking over and I’ll start feeling better. I don’t do much but rest when I can.

Brad has been great…he does everything from making my meals, to keeping track of my meds, water and food intake plus washing clothes and especially encouraging me by counting down the days and reminding me that i’m doing well.

This is not easy but it’s bearable knowing that everyone is praying for me back home. I hope you can post an update but if not, maybe you can just forward this text to the rest of the family.

I love you…Pat.

…and i love you…we all do.

………hugmamma.

THIS is the real ME! ... I pinky swear...

THIS is the real ME! … I pinky swear…

 

living her best life: #49…hanging in there

It’s been some time since I’ve shared Pat’s journey toward better health.  Chock it up to my daughter’s recent engagement…yyyeeeaaayyy!!!…and the current flurry of emails, phone calls and text messages as we try to plan her 2016 summer wedding. We both agree…it would be so much easier if we were both in the same place, instead of 2,000 miles apart.

Meanwhile, my thoughts are never far from my dear sister-in-law and her devoted husband. Wish I were with them to offer quiet support, uproarious laughter, and lots of hugs. Since I can’t be there…posting Pat’s journey is the next best thing I can offer.

Pat’s communication has been sporadic given her full time job taking care of business at The Mayo Clinic. 

On 6/30, Pat texted…I’ll still be sending you stuff that I don’t post myself. There’s so much stuff that I just need to write down so I don’t forget…blogging is hard work. [hugmamma here: Tell me about it! Blogging’s not for the faint of heart. I can’t even keep up these days.] It took forever to write one journal entry and that’s not even getting into the heavy stuff. I’ll send the link again. The website is Caring Bridge. There is a link called “tributes” which can be misleading. It’s donations for Caring Bridge itself and not specifically for me and Brad. It allows people like us to create a free website. Just want to make sure everyone is aware of that. 

We are acclimating…trying to get into some sort of routine. Brad is working, just finished a couple of loads of laundry and making the beds. I like it here…it’s very clean but still homey. [hugmamma here: They are staying at Gift Of Life Transplant House…a home that helps and heals. Mayo Clinic cancer patients live there during their course of treatment. Reservations are on a…first come, first serve basis. Bedrooms and bathrooms are private at a rate of $30/day. The public spaces are shared…including the refrigerator. It’s like summer camp…]

People are very nice and helpful…some have been here for quite a while.

How are things going with you and the family? Has Gary [hugmamma here: Gary’s my future SIL…son-in-law. In fact that’s what we call him. He started calling me MIL…mother-in-law…first…almost as soon as we returned from caring for our daughter during her recovery from the second surgery to repair her bowel wall. Then the running joke expanded to calling my husband FIL…father-in-law. Of course my sweet daughter needed a name, so I called her PIL. So here we are one soon-to-be happy foursome…FIL…MIL…PIL…and, of course, SIL…the guy who started it all.] gotten [my brother] to sit down and talk story yet? What have you been doing and more importantly…what have you been eating? [hugmamma here: Pat knows me too well. And no, I’ve not stuck to my diet. And no, I’ve not been exercising either. So…blah!]

We are trying to see a bit of Rochester [Minnesota] while I’m up to it and able…so we go out every day. Tomorrow we’re going to tour the Plummer House. Dr. Plummer was the first surgeon the Drs. Mayo brought in. Grand old homes where a lot of the first Mayo doctors still live today. It’s called Pill Hill. [hugmamma here: Big chuckle. My daughter’s got a hill named after her…]

Very interesting history surrounding the Mayo Clinic. Well, we’re off to Trader Joe’s…2:30 and we’re just getting out of the house.

Pat provided the Caring Bridge link… http://www.caringbridge.org

On 7/2, Pat texted…Hi [hugmamma] …how are things going? We’re doing good over here…vacation is officially over…got 4 teeth pulled today…told my girlfriend it hurt like hell, but I got a prescription for ice cream! Waiting now to meet with the transplant coordinator. Will have the weekend off…Monday morning I’ll have a central line put in…basically surgery to put in a catheter then a class in the afternoon to educate us on how to care for it. Tuesday will be the start of collecting stem cells. That will go thru Fiday if I need that many days. That’s all that’s on the schedule for now. [Are your daughter and her boyfriend still with you?]

Just found out I don’t get off that easy…nuprogen shots start tomorrow…one shot every day throughout the collection period…the sooner we get started…the sooner we can go home! [hugmamma here: Amen to that, girlfriend!!!]

[hugmamma here: Among other things, I told Pat “Love you. Hope you’re ok. Love Brad too…and the boys…and the dog. Is he still alive?]

Yes the dog and the rabbit are both still alive…the boys are doing fine. Not sure how clean the house is though. We are okay. Love you too…pass it on to your family.

[hugmamma here: So then I told Pat about SIL asking us, FIL and MIL, for PIL’s hand in marriage.]

Congratulations! I can imagine him trying to get a word in before you guys move on to the next thing…does he still have to formally propose to [your daughter]? [hugmamma here: Then we went back and forth about wedding dresses and all that good stuff, which I’ll fill you in on later.]

On 7/7, Pat texted…Weather is warm here too, but I’m usually cold cause we’re always indoors. Our room is on the basement level so it’s a lot cooler…cold. Things are going well here. Did the stem cell collection this morning…collected enough in one day where it normally takes 2-4 days…so we might have a few free days again. Next step is to meet with Dr. Hertz and schedule chemo and transplant.

…lots of hugs and prayers, pat and brad…

…you’re always on my mind.

………hugmamma.Butterfly-Header

living her best life: #48…let’s do this!

That’s what Pat’s been saying for some time now.

“Let’s do this.”

And so she is.

Hi [hugmamma.]  We are doing good.

The first day here was a whole bunch of tests…the worst of it being the bone marrow biopsy. No pain afterwards just a little discomfort. We were at the clinic all day from 7:30 until 4:30 and that was after arriving at the Transplant House at about 2:30 a.m. Needless to say we were both dead tired.

The 2nd day started at 7:30 again and ended at about 5 with visit with an oral surgeon. I get to have teeth pulled! [hugmamma here…Pat’s molars have not been properly aligned for some time now which has impeded her chewing food properly, which has contributed to her rapid weight loss.] Because they are loose and roots exposed, there is a great risk of infection after the transplant so they got to go. I was thinking what else can I get fixed while I’m here? We also got a little tour of the area where they do the stem cell collection and got an education on that whole process and on diet and nutrition after the transplant.

Today was a short day…a meeting with the transplant coordinator and with Dr. Hertz. Everything still looks good and we are moving forward. We have nothing scheduled for the next 5 days (paperwork between Kaiser and Mayo) so we’ll have time to just relax, get used to living in the transplant house and give Brad a crash course on how to turn on a stove! So far so good…Applebee’s is not too far away.

It’d be great if you continued the blog…when you have time. I’m also going to set up a web page where everyone can check on what’s going on. I’ll send you the link before I invite everyone else. 

Living in the house so far has been good. Others here are very helpful…it takes a little getting used to sharing the kitchen space with others. We have to get over feeling like we are guests in some one else’s kitchen. We made our own breakfast for the first time today. Only down side is I can’t just grab a cookie and sit on the couch…no food outside of dining areas…drinks are okay. Brad is doing okay with chores so far because I’m able to help. Gotta get him comfortable in the kitchen…shouldn’t be too hard. Will be heading to Trader Joe’s later today.

Spoke to the boys a few times. They seem to be doing okay. Planning to “face time” with them on Sunday. Maybe I can get them to show me what the house looks like, or maybe I don’t want to know. 

…love and prayers, pat and brad…from all of us.

………hugmamma.

living her best life #44: the facts…

Spoke with Pat while they waited for their flight home from Minnesota. In speaking with her, I got a lot of good information about what’s in store for her when she returns to the Mayo Clinic in a month or so. It prompted me to delve a little further into what had been a total mystery to me. I knew a little bit about multiple myeloma, but not all the scientific mumbo jumbo. I’m pretty sure I’m not alone in saying…I didn’t want to know everything. I was too afraid of what I might find out. Pat’s call gave me the shove I needed to go looking.

The website for The Multiple Myeloma Research Foundation was just what I was looking for to shed some light on Pat’s disease. Of all that I read, the following were of significance to me, as I’m sure it will be to the majority of my sister-in-law’s loved ones, near and far.

Multiple Myeloma is a Treatable Cancer

Multiple myeloma treatment options have increased significantly over the last 10 years. New multiple myeloma treatments have resulted in improved survival rates among myeloma patients. Even more encouraging, there are many promising new therapies under investigation now. We are not just accelerating the development of the next treatment, but by seeking to customize treatments based on our mapping of a patient’s genome, we are accelerating the development of the right treatment for each patient who urgently needs it.

The importance of genomics
One area researchers are working on is better understanding the biology of multiple myeloma. Through genomic studies (studies of the tumor cell DNA), we have learned that there are many DNA alterations in myeloma cells, and these frequently differ from patient to patient. The ultimate goal of genomic research is to develop personalized treatments based on the DNA in the myeloma cells of individual patients. These frequently differ from patient to patient. There is not one set of defining alterations.

Today, we know that certain DNA alterations indicate how aggressive the myeloma is and, in some cases, test results can help guide treatment decisions or determine eligibility for multiple myeloma clinical trials.

DNA alterations and treatment
For most DNA alterations, there are not enough data to guide treatment decisions. An exception is t(4;14). This is one of a type of chromosomal abnormalities called translocation in which a chromosome breaks and a portion of it reattaches to a different chromosome.

Studies have shown that patients with t(4;14) have better outcomes when treated with a proteasome inhibitor, such as Velcade.

Factors determining treatment
There is no one standard multiple myeloma treatment. A patient’s individual treatment plan is based on a number of things, including:

Age and general health
Results of laboratory and cytogenetic (genomic) tests
Symptoms and disease complications
Prior myeloma treatment
Patient’s lifestyle, goals, views on quality of life, and personal preferences

In addition, many cancer centers have developed their own guidelines for treating myeloma, and these may vary between centers.

Stem Cell Transplants

What are stem cell transplants?

A stem cell transplant, in combination with high dose chemotherapy, is a treatment that offers a chance for durable remission of multiple myeloma. High-dose chemotherapy, though effective in killing myeloma cells, also destroys normal blood-forming cells, called hematopoeitic stem cells, in the bone marrow. Stem cell transplantation replaces these important cells.

Hematopoeitic stem cells are normally found in the bone marrow and in the peripheral blood (blood found in the arteries or veins). Virtually all transplants in myeloma are now obtained from the blood and are referred to as peripheral blood stem cell (PBSC) transplants. Bone marrow transplants are no longer done in multiple myeloma. Stem cells are collected after approximately four cycles of initial (induction) myeloma therapy in order to reduce the amount of myeloma cells. Medications that stimulate the production of stem cells (called mobilizing) are often given to ensure collection of sufficient stem cells for several transplants.

All patients who are eligible for transplantation are encouraged to have stem cells obtained (also known as “harvested”) so that the cells are available if the patient chooses to undergo transplantation at some point during the course of their disease.Stem cell transplants are categorized by the source of stem cells: allogeneic stem cells or autologous stem cells.

Common side effects of high-dose chemotherapy and transplantation include nausea, vomiting, diarrhea, mucositis (inflammation of the lining of the mouth and digestive tract), and fatigue. In addition, because the high-dose chemotherapy attacks healthy, disease-fighting cells as well as cancerous cells, there is an increased risk of infection. Other possible, but infrequent side effects may include organ damage, particularly to the lungs, liver, and kidneys.

…okay then…so now i know.

………hugmamma.

living her best life #41…what’s up doc?

In response to a text sent her earlier today from nurse niece Jen, Pat texted back…

Thanks Jen. I only got bits and pieces of your text, but I got the gist of it. Was trying to send an email to update everyone but couldn’t. Was anxious about coming to MN, but now that we’re here, everything is good. Mayo Clinic is pretty amazing and impressive. Was there from 8 a.m. to almost 5 p.m.! After consulting with doc, did more tests…nothing invasive, just blood & urine. Doc here and at home are encouraged by my numbers and think I’m a good candidate for transplant. Follow up appt tomorrow. Also met with a social worker to go over psycho part of this whole ordeal. He and a nurse went into more detail about what actually happens during transplant. I’ll try to get an email out…in the meantime can you let everyone know we’re doing okay? Thanks again for checking in. Love you.

…hugs, jen…for updating pat’s network of supporters…

………hugmamma.

 

journeying towards her best life…#13

Just received a text from Pat…

It is a nice, sunny day again.

Getting ready to leave soon.

Got a busy day ahead.

Mammogram (fun!) at 11:40.

Meet with the transplant coordinator at 1:30.

And then treatment at 3:30.

Trans Coord to go over logistics and what not.

I think one has to qualify…not medically, but in other ways.

Since we could be gone for a couple of months, [the TC will] go over cost…what’s covered and what’s not…review my medical insurance plan…my emotional state of mind…support system…etc., etc. This is just the education portion.

I text back…

…”we are here for you…whatever you need. We are in this with you. The whole family is…hugs and love.”

………hugmamma.

 

gentle courage…

Earlier this evening I was on the phone speaking at length with a young woman of 50. She is the one whom I described in my previous email as having multiple myeloma and amyloidosis. I had called to offer my love and support during her hour of need. Instead we carried on with hilarity as we usually do on the rare occasion we’re together. You see she lives in Hawaii. I live in Washington State.

Fifteen years her senior, I marveled at my relative’s matter-of-fact outlook on her future. She’s taking each moment as it comes, doing what she can as opportunities arise. She’s taking supplements prescribed by a naturopath which were okayed by the attending medical doctor. She’s had accupuncture and will soon receive massage treatments. Obviously she is continuing a healthy diet, which includes veggies and fresh- caught fish…straight from the Pacific Ocean by way of her husband’s fishing pole.

Grateful not to receive any special treatment, my younger relative was taken aback when the day after she informed her coworkers of her health crisis, her office inbox was piled higher than usual with paperwork. No slacking there that’s for sure. And yet it’s good to know she’s valued for what she brings to the workplace.

Her husband too seems intent upon the family carrying on as usual. When I asked where he was, I was told “Oh, he’s at the beach.” Now how can anyone shed tears when these two refuse to let a couple of dumb diseases burst their bubble. In fact, when I asked if she was still working regular hours I had to laugh when the answer came back as a resounding “I worked the whole month of December, while my husband was off.” I asked what he was doing. “He went to the beach.” With their son.

Life goes on…as it should. Something about which we wholeheartedly agreed, my relative who’s a very dear friend, and me.

Half the battle is deciding to actively participate in getting better. Maybe having children gives moms no choice in the matter. And that’s a good thing. A great thing, in fact. We give life to our children, and they give us a reason to go on living.

A stem cell transplant may be the eventual route taken on the road to complete rehabilitation. Guaranteed family and friends will sustain our loved one as she goes for the championship in…the Mother of all Super Bowls. I for one will be right there with her, pummeling the enemy into mush. Without hesitation, she exclaimed she’d bet on me to win the fight. I called to lift her spirits, instead she gave my ego a boost.

I promised some comic relief for it was made clear that…

sadness was not part of the game plan.

………hugmamma.