Radiating Love All Around - by George!

Myeloma patients take note:  Multiple myeloma is a unique cancer and you will not be well served in your treatment decisions if you do not allign yourself with a doctor who specializes in treating myeloma.

Sue was referred by her regular doctor to a very nice cancer doctor in Fresno.  That doctor, an oncologist without experience treating myeloma, upon properly diagnosing multiple myeloma, referred Sue to Dr. Jeffrey Wolf, a specialist in treating multiple myeloma who is practicing at UC San Francisco Medical Center. That referral was the best thing that could have happened under the circumstances.

There are a number of reasons why I say it was the best thing.  Foremost among them from my perspective is that I have enjoyed these all expenses paid vacations to San Francisco. Foremost among them from Sue's perspective is that Dr. Wolf really knows multiple myeloma.  As a bonus, he's a pretty nice guy.

Sue has talked to at least six hematology/oncology doctors in the past ten days about the pain she is experiencing.  About ten days ago the Fresno oncologist misdiagnosed Sue's pain as osteoarthritis and prescribed Vicodin.  The pain persisted and increased, and Friday Sue paid a visit to Dr. Wolf.  He immediately hospitalized her and ordered a new MRI.  The new MRI showed inflamed nerves (nerve roots) radiating out of the thecal sac at the bottom of the spinal cord (in the sacral area near S1, S2, and S3).  As I understand it, the thecal sac is like a, well, a sack, that surrounds the spinal cord.  Several doctors from this hospital stopped by Sue's room to discuss the inflamed nerves and possible causes.  But none of them were certain of the cause.

Enter Dr. Wolf.  He was off Saturday and Sunday but back on the job today.  Apparently unknown to a lot of people, even medical professionals working in the bone marrow transplant/stem cell transplant department of a major regional teaching medical hospital, was this important, arcane fact:  Chemo therapy can kill all (or mostly all) of the myeloma cancer cells in your body except in two "sanctuary" areas of the body.  Those are: (1) in testicles; and (2) in the thecal sac.  Thus, and particularly in regard to the area inside the thecal sac, the blood tests may show the myeloma to be in complete remission (CR), but there can still be active myeloma cells within the thecal sac.

Dr. Wolf is quite certain that is what is happening with Sue, and that it completely explains her recent symptoms.  Further, the only way to treat these cancerous cells within the thecal sac is with radiation.  Fortunately, the radiation will be carefully directed to cause minimal tissue damage, and the nerves can practically take unlimited radiation without damage, while the myeloma cells are very sensitive to the radiation and should be totally eradicated by this treatment.

Sue is now (circa 2 p.m.) undergoing the PET scan which will show Dr. Wolf where all the live colonies of cancer cells are within the thecal sac.  He will then be in direct contact with the radiation oncologist in Fresno to indicate what needs to be done.  Sue is being discharged this afternoon and will be going back to Fresno with me today.  She'll start radiation therapy in Fresno as soon as possible.

Once again, our thanks go to all of you for your prayers and concern.  Additionally, special thanks to Jerry, Ermintrude and Pat for your comments on the issues of radiation and PET scans.  I raised your concerns with Dr. Wolf.  Pat, you are correct that the PET scan is the only way for Dr. Wolf to identify where the cancer cells are clustering.  Jerry and Ermintrude, this radiation will be very directed and, for better or worse, it is the only way to kill myeloma cells within the thecal sac.

So off we go, radiating love all around.

Suki-Yaki Doctor Talkie - by George!

Today was another cloudy and chilly day in San Francisco, but the rain stopped and the sun came out in bits and patches.  Chilly with patches of sun, but not real warm sun, kind of describes the day in all it's particulars.  Our blog buddy, Becky L, warned us early on after the myeloma diagnosis to hang on because this would be an up and down ride.  Well, Becky, you were right.

Sue was napping this afternoon and I was bored from being cooped up in a tiny hospital room while the City was doing its Sunday thing, so I decided to take a walk.  I walked west on Irving to 9th Avenue and encountered the Thai Noodle Cafe.  There's nothing like a big bowl of steaming hot Thai suki-yaki soup (not to be confused with Japanese sukiyaki).  Matched with hot sake wine and soft Thai music, it'll take the chill off any day. It'll melt your stress and put you in a meditative state of mind.  Or is that a medicated state of mind?  Oh, never mind.  Moving on.

I bought a Starbucks cranberry bliss bar on the walk back to appease Sue and got back to the hospital just in time to hear the latest from the on-duty doctors.  Sue's midnight MRI Friday night revealed inflamation in the nerve roots (the area where nerves leave the spinal cord) in her lower back (regions S1, S2 and S3).  This inflamation extends out on both sides of her sacrum, and is the probable cause of her back pain and the probable cause of her muscle weakness in her legs and the probable cause of the increase in her neuropathy.  The good news today was that there is no evidence in the MRI of a fractured bone and it does not appear to the doctors that Sue's symptons are resulting from a tumor or myeloma cell mass pressing on Sue's spinal cord.

There are a host of possible causes of the inflamation of the nerve roots, and some of those are not good.  Well, they're all not good but some are worse than others.  Some of the possible causes which have been discussed are: (a) the nerve damage is resultant from the Velcade (that's the same awful chemo stuff that caused Sue's neuropathy, but which also killed a bunch of the myeloma cells and stopped the original back pain); (b) a viral injury, possibly related to the shingles which attacked Sue a couple of times during her chemo treatments; (c) possibly the myeloma is acting up again in that localized area; (d) some of the lesions which occurred in Sue's pelvis and sacrum prior to chemotherapy treatment could be implicated.  The doctor used some words I wrote down but couldn't understand or spell well enough to google.  I thought he said something like "gimbray syndrom" but he dismissed it immediately as just talking out loud, so I left it hanging in my note book like a dangling participle.

The other good news is that, for now, the extreme pain Sue was experiencing is being controlled, they are treating the inflamation with steroids and that appears to be working, and they are continuing to investigate to find the cause of this new problem.  The bad news is that Sue's not going home tomorrow, but I probably will.  The other other bad news is that this guest chair "bed" they let me sleep on in Sue's room is killing my back.  I'm going to have to apply to get some of Sue's pain medication if I have to sleep on this goofy thing too many more nights.  Sheesh.  Grand Hyatt king one night and couch rat the next.  Like Becky said, up and down.

The doctors here have not ruled out radiation therapy.  The plan is to put Sue through more tests tomorrow, including a PET scan (that's Positron Emission Tomography).  Dr. Wolf is going to be around and back on the case tomorrow.  We like Dr. Wolf.  He's as comforting as a sheep's wool sweater on a chilly San Francisco day.  Hmm.  Maybe alpaca?

Really Good Day

I just called mom, probably 6:45. She hadn't answered two of my earlier calls. When I DID get to talk to her she sheepishly told me that she had swiped the earplugs they gave her for the MRI. She said they were really good and had a cord attaching them so they didn't get lost. In her words "they're really nice." Anyway they had helped her get a good two and a half hour or so nap in this afternoon. I guess she was up late last night. They took her for an MRI last night between 11:00 PM and 1:00 AM all the regular people had gone home for the night but these people were called in special. In the morning, all the doctors came into her room. She said it felt like an episode of House. They had just had their pow wow, came in with hypothesis, doing strength tests etc. One side (I think she said left) is significantly weaker. Her spinal column is in tact, some of her nerves were showing inflammation and maybe this could be connected to the shingles she had early on in the diagnosis.
Mom says her pain is under control, they're giving her a medication called Dilaudid.

She says all of this stuff that's going on is affirming because these doctors are recognizing that the issues are real, and are seriously investigating the reasons and what can be done to fix them.

This experience is soooo different from mom's last experience. She said she had a "really good day."

Still no answers, but the detective work is going. Progress is good right?At least things are happening.

Saturday 9:30 AM

My mother wanted me to reasure all her readers that :
She is still in general remission, but because her 13th and 14th chromasomes are also mutated her strain of Multiple Myeloma is much harder to treat. This is why Dr. Wolf wants to get to the bottom of this and figure out whats going on with the lesion in her bone. Granted this is still sort of an if and that's why they're doing the tests.

Some good news is that they finally found a medicine for the pain. (Vicodin and Demerol werent really doing the trick.) She says it kicks in quickly but only lasts for an hour/hour and a half. It's important that they figure out how to manage the pain so she can com home for radiation.

6:00 PM

The Doctor in S.F. noticed some stuff in a past MRI and thinks it may be that OR that there could be a pocket of cells that didnt get killed. If this is the case she'll begin radiation.

According to ther "This doesnt mean anything bad...I'm not sick...I just hurt."

She says this situation is a lot different because she feels normal, just pain.

When I talked to her on the phone at maybe 5:40 pm she said they had given her quite a bit of demerol. It didnt really help the pain, but she felt good. Haha. She says its nice to have people who know what theyre doing with the meds because she doesnt feel bad about taking more when other people are in charge.

5:21 PM Friday

Mom has been admitted to UCSF, they will be doing tests tonight and through the weekend. My dad is coming home as neither of them were anticipating staying through the weekend.

Bump in the Road

Mom has been having a lot of hip/leg/back pain lately. It had been gettting worse. She figured theyed get it sorted out on her appointment in San Francisco, but didn't think it'd be anything big. Ijust got a text message from her saying that the "pain may be caused by lesion in sacrum. Admit to csuf med today. Not emergency, but timely. Pray that we figure it out. Please." Soooo that was quite the news. I'll be posting updates as I get them here.

Group Therapy

I have found that my healing is enhanced by my interaction with others. I also was surprised by the number of people in our church who were being diagnosed with cancer. My friend Deb suggested that we start a support group for people with chronic illnesses which would meet weekly at our church. Since September we've had about ten participants with about eight people on any given Tuesday. I've enjoyed meeting weekly because it gives us the opportunity to develop close relationships. While there are several different ailments represented in our group, we are able to discuss issues that we have in common. We share our concerns and pray for each other. Most evenings someone leads a discussion. If no one leads, we just talk.



I recently went to the area Multiple Myeloma support group meeting. It is supported by our local Leukemia Lymphoma Society. The planned program was learning about a local hospital's music therapy program. While the program was interesting, the best part was networking with the three other cancer bearers. After the program, the four of us stood around comparing notes about our treatments. That was "priceless." While I don't have "relationships" with these people, I look forward to seeing them again in December. The facilitator said she sent meeting notices to 80 Multiple Myeloma clients in our two county area. I was surprised at the large number. What a wealth of support and information! It's too bad the group meets only monthly.



I participate in another group that doesn't even know it's a support group. I always looked forward to the time I could participate regularly. Too bad I had to have cancer in order to be active with this group! This is our church quilting group. These ladies greet each other with open arms. They have listening ears and lots of experience and advice. I'm not just talking about quilting experience (there is lots of that), but they have life experience, and even some cancer experience. I can choose to talk or just work silently. This group of about 20 ladies carefully make many quilts that are auctioned off to benefit MCC, our Mennonite relief agency, which helps people in need around the world. Visiting and working with these ladies is a high point of my week.

Support is found in many forms. I get support from my family, friends, church, and work. If we are able to find a support group to be with, that is good too. All are part of the healing community. I thank you!

Uneventful

Last Friday, Valerie was my chauffeur for a trip to the LA area to visit my dad and his wife. We stayed with Aunt Audrie in Hermosa Beach. Val and I agreed that staying at Aunt Audrie's house is like coming home. We enjoyed visiting with my dad on Saturday and Sunday. He is in an extended care facility after a car shattered his leg when he was hit walkig in the crosswalk. He was glad to see us, and especially glad that I brought him snickerdoodle cookies! We visited with other family members, shopped briefly, and went to church with Aunt Audrie to see her play in the bell choir. We came home Sunday night after a great weekend!

On Monday I had a doctor appointment. Some of my blood counts and iron were a little low, but Dr. Garley still isn't concerned about that. So, despite the lady who fainted while my blood was being drawn, and the person who was sick and hiding in the bathroom, and that it took 3 hours to get done, it was an uneventful visit. We like uneventful doctor visits.

Yesterday, Tuesday, I slept in until 9:30. I find that I need about 10 hours of sleep. I don't take naps during the day, though. I had time to read the paper and do the crossword puzzle before getting ready for lunch. Lunch was a social affair with three quilting friends. Getting together with friends is so theraputic. Tuesday evening was the Assurance (chronic illness)Support Group at church. This group started in September while I was in the hospital. As soon as I was able, I started attending. I do find this group to be very encouraging and supportive. It's good to get this boost every Tuesday.

Today was quilting at church. I didn't get far into the room before I was snagged to help tie a comforter. Alvena showed me a nifty, fast way to tie a square knot. So, even though I didn't do traditional quilting, I learned something new.

I like to get out of the house each day, even if I'm just running errands. I'm saving the car wash for tomorrow. Hmmm. It's supposed to rain tomorrow - maybe not such a good idea - we'll see. I try to walk every day with a friend. My neuropathy still gives me fits (figuratively). On Monday I fell at a friend's house. I fell flat on my face onto a carpeted surface. I made a big BOOM that shook the house. My glasses scraped my nose slightly (no blood). But that and my ego were all that was injured.

Every day people share with George or me that they are praying for us. I so appreciate that. I know that God is faithful and that he has the perfect plan for me. Thank you for being part of that plan.

San Francisco

Last Friday I had an appointment with Dr. Wolf at UCSF in San Francisco. Because the Bay Bridge was out of commission, we went farther north and took the Richmond Bridge on Thursday night. The meeting with Dr. Wolf was very encouraging. He assured me that the neuropathy would go away within a year. He recommended I take L-Carnitine and Alpha Lipoic Acid to help the neuropathy. He also noted that my immunoglobulin-G is low. That is the blood cell that fights off illnesses. I will have IV-IG given to me at least monthly here in Fresno. That should give me some resistance to colds and such until my own defenses can take over. In all, everything was good news.

On Sunday I went to church again. It is so good to worship God with my church family. I am so thankful that I feel better. I pray that I stay healthy as I continue to grow stronger.

Busy Wednesday

Whose idea was it to schedule an 8:00 am doctor appointment? It was hard to get going this morning! I apologize to all you responsible, early people. I'm out of practice with being early. Doctor Garley says my blood test numbers are a little low, but not anything to worry about. I'm doing fine and producing all my own cells. She says I need to worry about germs for another couple of months. I have another doctor appointment Friday in San Francisco. I'll know more about my health status after I see Doctor Wolf.

Since I got such an early start this morning, and I was feeling pretty good, I went to quilting at church. I stitched one 15 inch line. My stitches looked ok, especially since I have numb fingertips due to neuropathy. I didn't want to over-do, and I figure I can do two lines next week. I drove back home and helped Jessie carve pumpkins. We have three pumpkins and put a different quilt square on each one.

Now that I'm done with that awful cold I'm feeling better. Neuropathy is still giving me grief. I increased the medication yesterday, so today I have less pain, but more numbness. I pray that I have temporary neuropathy and that it will go away in the next two months. Thank you, friends, for keeping me in your prayers. I know they're heard.

Somehow I managed to catch a cold a few weeks ago. It was the knock you off your feet and put you in bed kind of cold. Fortunately, it wasn't Swine Flu, but it had many unpleasant symptoms. I couldn't bear the look of food, much less eat it. This cold lasted two weeks. Now I'm feeling better. I've also become rather germ-phobic. I don't want to go through that again!

I went to church on Sunday. It was sure good to see some of the people who have been supporting me through prayer, food, quilts, and cards. I enjoyed singing and realized my singing muscles are a little out of shape! I tried to not shake hands to avoid germs, but it was hard to break the habit. Everyone was very understanding. I hope to stay healthy so I can attend next week.

Dye n a Cold

Last week we dyed moms peach fuz.
Before:After: Not a HUGE difference but now the really light hairs cant all hide. We might try again now that I know the dye won't stain her scalp a funny color!

Mom got a cold last weekend and hasn't had much fun with it. At least she knows she's not the only one in the valley with her symptoms because SaveMart was all out of the recommended over the counter stuff. While misery loves company, this sort of company wasn't so much appreciated because she wanted those meds. Meh. We found some a little later.

One perk to this cold has been that previously if asked how she was doing she would NEVER say better. She couldn't see how she was improving daily the way that all her friends and family could. NOW she realises that she was in fact doing better.

Her blood counts seem to have met the approval of her doctor. Her hair is slowly getting longer. She is down to one ativan a day. The nausea is still lingering. The doctor says that at this point it is no longer a direct result of the chemo but more her body clinging to the nausea. She had nausea for the full 9 months of both of her pregnancies and then from chemo. Her body/brain is sort of holding onto the memory/action/experience. The doctor wasn't too concerned, but this isn't something mom really enjoys lingering.

The other thing that sort of has her down in the dumps is her neuropathy. (Her nerves are telling her brain her feet are numb and cold, her brain also receives pain signals.) This hasn't gone away since her FIRST chemo treatment and the doctor says there is a chance it might not go away. Mom has decided that neuropathy staying just wont do so she is bumping up the exercise in hopes of kicking it to the curb. (There's a chance it might have to do with circulation) Pre-cold she walked fairly regularly (4 days.) Things were looking up then the cold sort of slowed her down. I think now that she has gotten meds from the doctor and the cold has seemed to wan she'll be up to walking again. Give her a call if you have time to be a walking buddy for even 20 min. She really values the time to talk with friends, and at the moment she needs all the circulation improvement/endorphins she can get!

A Cup of Tea

Normally I drink a cup of tea every morning before I head off to work. Since the Stem Cell Transplant, that has not been my desire. I've tried different flavors with little interest. Today I tried Earl Grey and it was good! I had two mugs full. What do you know. These things happen at different times. I measure progress by day and weekend. I still have some nausea and neuropathy is in full force. If anyone knows how to get rid of the vile side effect, I would be most grateful. Currently I am taking B vitamins and walking daily.

I visit the local doctor weekly. I go to our church's cancer support group every Tuesday. I'm looking for walking partners.

Thank you to those of you who read George's Blog. It is a good way to keep up to date. I'm not a great writer, so I'm counting on him.

Thanks so much to all my prayer partners.

Going to Watch A Movie

Today mom is mostly a two year old. However she’s still my mom. One of the hardest parts of this Multiple Myeloma journey is maintaining a mother daughter relationship (and even a father daughter relationship) when the daughter becomes a caretaker. Mom wanted a shower today. Well, first she kept telling me she was going to watch a movie as she was waking away from the room with the DVD player. Once we established that she was in fact going to take a shower, she didn’t want my help doing anything. I just stood within rescue reach as she unsteadily climbed into the shower. She made a couple exclamations when the water was colder than she had anticipated, or she couldn’t quite transfer the water from the bath spout to the shower head. I asked if she wanted help, but she boldly declared that, no, she didn’t want any help. I got her clothes out and ready. The water stopped. She had her own towel and didn’t want help getting it. As she stood there, cold, wet, contemplating stepping over the tub ledge with her unsteady limbs she finally let me help. We got her dressed and into bed and everyone was more comfortable. She is contentedly listening to an audio book in bed now. She has her moon boot down slippers on to keep her feet warm. The neuropathy is still causing weird sensations in her legs and feet. Her meds are leaving her pretty dazed and confused.

Ps. Mom's phone got doused in grape juice somewhere between when she left for the mountains at 1 on Friday, and Sunday. Should you wish to get ahold of her today you can call her on my phone.

Forward

For updates on Sue's condition, please visit George's blog.

http://www.themywifehascancerblog.blogspot.com/

Sue will resume blogging when her energy picks up a bit.

Good News, Bad News

Not about my condition! Good: moved to a private room-more space, more quiet. Bad: My cell phone doesn't get a good signal. So call my room number: 415-514-5320. Feel free to call - It makes my moment!
I've done the significant part of my job here. I had the super chemo, then a day of rest, then my harvested stem cells were defrosted and put into me. Now I have about two weeks to get over my nausea and gain some immunity. Hopefully I'll be germ free and, not have many side effects. My blood clot seems to be taking care of itself. The swelling is gone.
For more colorful information, I hope you're checking out George's blog. Thanks to anonymous who wrote the great poem as a comment to the last post. I like it, expecially the personalization. I wish I knew who you are!

And they're off...

We leave today for San Francisco. I'll be admitted to the 11th floor of the medical center on Sunday. The super chemo treatment will probably happen on Monday. That treatment will be about 17 minutes of whammo!
I would like to maintain contact with you. You are welcome to call my cell phone, but the hospital asks that we not have long conversations on cell phones. I'll get my bedside phone number when I am admitted. My address is: Susan Harper, Patient; 11Long; 505 Parnassus Ave.; San Francisco, CA 94513.
I feel like I'm packing to head off to college or some other great adventure. On the other hand, I know it's not all going to be light hearted fun, so I do have some apprehensions and dread. I know I am in good hands.

Strength in Numbers

On Thursday, my Bass Lake quilting friends (all but Ruth who is in San Diego), brought breakfast over. A nice bon voyage breakfast. I was encouraged to open a large gift bag and pulled out a beautiful blue and white quilt! 21 of my friends had been working on this quilt over the summer. I did hear whispering of "sewing kits" going around but had no idea it was about a beautiful quilt for me! It will look beautiful on my bed at UCSF. As Dotty said, "the love of God and my friends will wrap me in warmth like a quilt."

Friday, the postman brought a box to my door. It had my cousin's, (minister Bruce) address on the return. Inside was a lovely hand knit shawl. The shawl was dedicated during the worship service at the Lakeville (Mass) United Church of Christ. The hang tag read, "may it enfold you in our love and prayers." I can imagine times when sitting up in bed that I will want something across my shoulders. I will think of the kind people in Massachusetts who prayed over the shawl continue to pray for me.

Another group project that has been very encouraging is my Aunt Betty's church, Rockland Community Church, in Golden, Colorado. Every week I receive a couple of cards from their card sending ministry. I love getting kind words through the mail. This group's dedication is impressive. I'm glad to know they're praying for me.

Thank you to everyone who thinks of me. I am amazed when I run into people who say they have been praying for me every day. I have never before experienced this kind of attention. I know that God has lessons about prayer and dedication here for me.

Through Thick and Thin

As written/transcribed by Jessica, any misplaced or lack of commas are that of the typist:
No change in the blood clot. I received a 7 day supply of blood thinning shots which makes tomorrow the halfway point. I'm hoping for some change or progress by then.
I've had time to finish a Pulitzer award winning book, borrowed from Maggie, called Middlesex by Jeffrey Eugenides. Out of five, I give the book a 4, because you had to invest a lot of time into it. In other words, not a light read.
I'm also taking some more time to enjoy the devotional Praying Through Cancer. The two page devotions are a nice break from the heavy read.
Our current prayer requests are for the clot to go away safely and that we can register at UCSF on Sunday as scheduled.

The Clot Thickens

Update from Jess:
The last couple days Mom's neck has been hurting, very tender to the touch and hurts to swallow. Today she got in touch with Bridget at UCSF and Bridget ordered an ultra sound to see what was going on. Results were sent to Dr Garley and Bridget and they agreed that it was a blood clot. Mom was injected with blood thinner and sent home for bedrest with limited neck movement. Prayer requests: Please pray that the clot goes away in a timely fashion and doesnt affect the Sunday August 30 hospital admit date.

Change Happens

We heard from Bridget, the stem cell transplant coordinator nurse, that she would try to get me into UCSF Hospital on Sunday, August 30. I am a little anxious that I stay healthy until then. The area of my neck where the catheter for stem cell harvesting was inserted is now painful. It hurts when I swallow or turn my neck. I hope it is normal bruising, and not signs of infection or bleeding. The other thing driving me crazy is the neuropathy in my legs. I have to remind myself to increase my pain meds. So please pray regarding these three specific things: stay healthy until I get admitted, neck pain, and neuropathy.

There has been a change in the teaching plan for my room of fifth graders. The district’s financial decisions required that we drop a third grade class. That teacher, Patti Moore, will be teaching in Room 14 all year. I thought Stephanie was going to be a great long term sub, however, having Miss. Moore as the consistent fifth grade teacher all year is even better. When I return in January, I will be a push-in teacher (helping in several classes), which gives me a great deal of flexibility. One thing that never changes is change itself!

George and I drove home from San Francisco today (Wednesday). Now that we're home I can tell that we are "decompressing" from a big event. Even though everything turned out really well at UCSF, it was still stressful. I'm sure we'll be back to our normal selves tomorrow.

Tuesday started early for us. We walked to UCSF from our hotel at 7AM. Instructions for my dialysis said to eat a hearty breakfast, so that's what I got at one of the many hospital food venues. We reported to the busy dialysis room, I got hooked up, and there I laid, not moving, for 4-1/2 hours! (For more details and photos, check out George's bolg. The link is in my side bar.) When that was over, the catheter in my neck was bandaged again, complete with bright orange label!

We walked across the street to meet with Bridget, the scheduling nurse. We talked about our return trip the end of August. Because I am such a "healthy" myeloma patient, I have low priority for getting scheduled into the hospital. Bridget wanted several options for admit days so that she would have flexibility in getting me in. Bridget had other really good news. My first draw of blood contained more than enough stem cells for two transplants (they collect for another transplant years from now). That means I only had one day of dialysis. It wasn't a bad experience, but I wouldn't want to repeat it if I don't have to! It also meant that my catheter was removed, along with the bright orange label.

George and I celebrated the good day by dining at a nice Italian restaurant. We talked and "reviewed" all the good results and experiences we've had. Again we gave credit to our huge prayer base. With so many people supporting me I feel buoyed up. That positive feeling shows, and I thank my friends and family for giving me that feeling.

Only half Frankenstein

Here we are in San Francisco. Last night we took public transportation from breakers to bay. We were proud of ourselves for figuring it out. This morning I gave blood for blood tests. The good news is that I have a lot of white blood cells. I find out at 4:00 if those white blood cells are stem cells.
Next, we went across the street to the hospital for my catheter in my neck. The doctor used a local anesthetic, so I could hear and feel tugging and squeeking as the tubes were inserted into my veins. Others who have gone through this before me had two catheters, one on each side, thus the Frankenstein look. I just have one opening on my right side that branches off to two different "hoses." The scarf advice was good as the bandaging covers a large area. If that wasn't bad enough,the doctor slapped a flourescent label on it!

We decided to check out the amenities of the hospital since George and I will soon be spending three weeks here. The cafeteria serves a wide variety of pretty good food. Then we checked out 11Long (my floor for the transplant). We found the family lounge. It has games, puzzles, books, vhs movies & tv, and computers. I am working on one of the computers right now- very convenient.
Our hotel, The Carl, is close and economical. Our room, however, is quite small. George and I can't both be moving around at the same time or we will collide. We are finding other places we can "hang out" so we don't go crazy in the cramped room. We are pretty much exploring. I brought books and hand sewing (Grandmother's Flower Garden quilt), George brought books and is studying Spanish. We're content anywhere there is coffee and tea and quiet. When we're done for the day, it's back to The Carl. We're on the third floor, facing the street. The three car electric train goes by at regular intervals and has a stop right in front of our room - noisy. I'm glad I brought my ear plugs.
We are on an adventure. It's new. We're learning a lot. The people are very friendly. Sounds like a vacation - Wish you were here! It probably feels like that because so many people are sending in their prayers. Keep it up! I love you!

Stem Cell Harvest

Tomorrow George & I are heading up to San Francisco again. We want to be ready to start the Stem Cell Collection process bright and early Monday morning. On Monday they measure the count of stem cells in my blood. If there are not enough, they will give me a "booster" shot to get my bone marrow producing! Also on Monday they "install" the catheter tubes on either side of my neck. One bit of advice I got from another Stem Cell Transplant (SCT) patient was to wear a scarf around my neck because I'll look a bit like Frankenstein!
Then on the next days, my blood will be drawn out (not all at once), centrifuged, the stem cells removed, and the rest of the blood put back into my body. It could take one day, or as many as four days. Usually it takes two days. They take enough stem cells for two transplants and keep them frozen until I need them again.
I hope to be back in town by Thursday or Friday. I have a few specific prayer items. George is missing a lot of work. We are thankful that Valerie works at the office, but it is hard when he is absent. My neuropathy has become quite painful. I should recover from this side-effect, but I hope it is sooner rather than later! A big thank you to all of you who are praying - you are so encouraging to me.

In-between Week

This week is the week between the big meeting in San Francisco and stem cell collection. It’s been very busy because there is a lot I want to do before we go to UCSF. I visited my classroom at school. I was pleased to see that some anonymous friends at Pinedale had papered the bulletin boards in my room. That was a generous gift as papering is a tedious job. I thank those mystery friends. I’ve also met with the teacher, Mrs. Benight, who will have my class the first semester of the school year. We’ve met a couple of times to go over curriculum and class/school procedures. Perhaps the bigger job right now, is getting the room set up. At the end of the year everything had to be boxed up to be moved out of my room. Everything was moved out for asbestos removal and installation of new carpet. The furniture and boxes have returned to the middle of the room! Teacher friends have helped Mrs. Benight figure out where some things go. I worked with her on some of the boxes and what goes where in the shelves. When I called her this afternoon, she sounded quite cheery, so the job hasn’t overwhelmed her yet! It looks like my class will be in good hands.

I’ve had the opportunity to talk with two women who have had stem cell transplants at UCSF. Doctors and nurses can describe the procedure, but it’s not like talking to someone who has actually done it. The Leukemia/Lymphoma Society gave my phone number to a woman who was very encouraging. We spoke for quite a while and she was very pleased with the outcome of her transplant. Karen brought a friend to my house to meet me. This friend had a stem cell transplant at 11Long, UCSF. She brought her photo album (plug for Creative Memories) which chronicled her stay. It was neat to see pictures of where I’ll be staying. This woman, too, is enjoying a full life after the transplant.

Again this week, friends have pitched in to drive me places. You would not want me on the road right now. I had a very pleasant Wednesday morning when Jenny came over to remove the brown flowers from my zinnias and roses. I am so thankful for everyone’s support. It’s hard to be on the needy side of things, but I am meeting and getting to know better so many fabulous people. You are a blessing to me and part of God’s plan for me. Thank you.

Good News!

Today was a long day, much of it spent on the road. We had a bit of traffic on our way to San Francisco, but checked in at the UCSF medical center at 10:03. The 10:00 appointment was drawing blood and other basics. Our 11:00 meeting was with Doctor Wolf and Nurse Bridget Mazzini. We talked about the upcoming stem cell transplant and its risks and benefits. Dr. Wolf told me that based on last week’s tests, my myeloma is in “complete remission.” Yahoo! That’s good news! Now, we have to remember that I won’t be cured, the myeloma isn’t gone, just that the various indicators are within acceptable ranges. It also means that I’m in great condition for the stem cell transplant.
We set up some tentative dates for medical work at UCSF: Stem cell collection August 16-20, Chemo and transplant September 1- 21. These dates could change. I will need help at home when I return from UCSF after September 21.
I believe that God has carried me through this cancer adventure. God has certainly blessed me with fabulous family and friends. Thank you to everyone who has prayed for and helped me so faithfully since May. Thanks to my friends and family, I feel very well taken care of. We’re at the half-way point, and I hope you’re staying with me!

Road Trip

Tomorrow, bright and early, we start our journey to San Francisco. George and I pick up Cindy, Deb, and Maggie at six o'clock and hope we don't have many traffic jams that slow us down. We have meetings at 10:00, 11:00 and 1:00. I expect that we will be setting up the dates for the various treatments leading up to and including the stem cell transplant. One meeting is with a social worker to discuss at home care following the hospital time (3 weeks). That's why we have Cindy, Deb, and Maggie with us. I couldn't just tell the social worker that I have lots of friends looking after me, I had to bring them with me! These faithful friends are giving up a full day to meet with the social worker for me. That's friendship! Please pray that all goes well- from travelling to setting up dates.

Fun Friday July 31, 2009

Fun Friday happens at school when you’ve done all your work throughout the week and you get to do the fun activity on Friday. Well, we worked hard all week. We repeated every test I had already taken plus a few extra. The final test was the bone marrow biopsy at Dr. Garley’s office. I’m getting pretty good at this. Thanks to all the people who transported me to my appointments. Patti and I did a “marathon run” on Wednesday, starting at 6:50 through 12:30. We deserved a nice lunch. On Friday all the tests were done, so I just did lunch! I don’t know any results. The results will all be sent to Dr. Wolf in San Francisco. We will see him this Wednesday, the 5th. After that visit, I’ll have more dates to share.

Thursday, July 23, 2009

Today was my last chemo treatment of “VDD” Velcade, Decadron, and Doxil. Next week is my week “off” from therapy. We have filled that rest week with tests that will have results sent to UCSF. On August 5 we load up the Honda CRV again and drive to UCSF to meet with Dr. Wolf, the scheduling nurse, and the social worker. I have to bring my support people with me. (Maggie says we don’t have a bus that big). The social worker wants to make sure that my 24 hour care givers will know how to tell if something is wrong. Apparently the social worker will let my insurance company know that I’m a good risk. So August 5th is a road trip to San Francisco. After that I should know more dates.
I’m looking forward to moving forward.

Monday July 20, 2009

Good day! In Fresno, we got nearly all the UCSF required medical tests scheduled with-in the two week window. I’m impressed. We are on a tight time-line and I’m ready to go!
I mentioned that the neuropathy (in my legs) is giving me grief so we increased the dosage of Neurontin. Dr. Garley also prescribed some Vicodin. I came home and had the best nap in weeks! Even with half a tablet!
This evening Kent and Pam dropped by with a home-made peach pie. It was good to talk of school topics and look towards the future.
God shows his love for me by putting his people in the right place to support me. For that, I am grateful.

UCSF Continued: The plan - long version

Here’s what needs to happen;
1. Re- take the tests we’ve already taken (in Fresno) and send new results to Dr. Wolf.
2. Return to San Francisco to sign consent forms and meet with a social worker who wants to know that when I am finally discharged after transplant, I will have around the clock care. (This is where my friends come in!).
3. In Fresno I get daily shots to encourage the production of the stem cells and forcing them out into the blood.
4. Back to San Francisco where I will undergo the collection of stem cells as an outpatient. (We’ll stay in a hotel.) A large IV catheter will be placed in one of the large veins in my neck. The collection of blood is taken and separated to collect stem cells. Remaining blood is returned to my body. Each collection takes approximately 4 hours (lying very still, no eating, using a bed pan – tv available) This could take 1-5 days depending on how productive I am. When I have enough, the catheter is removed and the stem cells are frozen for later use (2 treatments).
5. I get a rest in Fresno, where I may need more blood tests.
6. Back to San Francisco for the Transplant! I get a new, super, powerful chemotherapy drug called melphalan -1 time injection. Then after two days, when the drug is out of my system I will be given my stem cells by transfusion. Seven to ten days after my stem cells are given to me, my blood counts will go low from the chemotherapy. This is the most dangerous period of the transplant. I will need antibiotics to prevent infections.
7. I will return to Fresno for recuperation (round the clock care at home) I may need transfusion of red blood cells. I have to return to UCSF at least once in the first week at home. For a month I have to avoid groups of people and avoid people with illnesses. I will have blood tests monthly. After 3 months I will have a repeat bone marrow aspiration and biopsy procedure. Another bone marrow biopsy is done at 1 year post-transplant.
8. The doctor believes that I will return to teaching at the semester break, Jannuary 22, 2010.
9. Whew! That’s a lot of work!

Meeting with Dr. Wolf. Tuesday, July 14, 2009

George and I had an early drive from Fresno to San Francisco. We arrived at UCSF on time, 12:30, and had a minimum of wait. They drew blood. Dr. Wolf’s assistant, Dr. Wieduwilt, MD,PhD. went over my medical history. Dr. Wolf then spent over 50 minutes with us – I know because we turned over the 90 minute cassette tape we were recording on! The scheduling nurse described all the hoops we now have to jump through: more tests, more drugs, more trips to San Francisco, and more signatures. We’d like to be on the fast track, because that means less chemo therapy here. It was a great thing that we had read all the current literature here, because we were fairly well prepared for the news and procedure. It was an exhausting day, I was glad we didn’t have to drive home that night.
We stayed the night in a refurbished old hotel at the east end of Golden Gate Park, quite nice. We had a relaxing meal then returned to the hotel. We drove home the next day.

Important Tuesday, July 14

Bright and early Tuesday morning, George and I will head north to San Francisco. We will be meeting with Doctor Jeffrey Wolf of the UCSF Medical Center.

Monday, July 13, 2009

I’m so glad it’s Monday! Did I really say that? Yes. Today I had my visit with my regular oncology doctor. She didn’t give out any statistical information, but was encouraging anyway. Oh yeah, she said I could double the dose of Neurontin for more neuropathy (leg pain) relief. She confirmed Jennifer’s & Deb’s advice to gradually increase and decrease dosages. Doc was not in favor of reducing the amount of Velcade (the cause of the neuropathy) in my Chemo Cocktail. The IV was easy because of the Medi-port. While “dripping,” I read some more of the information Aunt Audrie got from the Los Angeles Area Myeloma Support Group. Talk about support, Aunt Audrie went to the meeting all by herself and got a wealth of current information for me. She bundled up all the booklets and mailed them to me. Today I read: Understanding Stem Cell Transplant. So now I do understand modern bone marrow transplant. Cindy drove me home – by way of the local rice bowl vender. Jennifer L. and kids showed up at home to swap recently read books. Like I said, it’s a good Monday!

ouch - seriously

Monday, July 06, 2009
I can’t remember what I was going to write about because I have a new topic. I have experienced a new stage of neuropathy. I’ve had neuropathy since the third week. It isn’t too bad. A little tingling, my hands and feet feel hot and cold or can’t tell what they feel. I didn’t understand what the big deal was. Today I found out about the big deal. I’m kinda whining, but this is pain. I’m feeling pain behind my knee, around my ankle, in my arches and below my calves. The only relief from the pain is when I’m walking. It doesn’t let me sleep. I looked it up on www.cancercompass.com . Everyone agrees that this is the real kind of side effect. I haven’t been taking Demerol , but today Jess gave me a shot. No effect. I took multi vitamins, a banana, and cough syrup with codeine. It looks like if you have this effect, you shorten your Velcade treatment. Unfortunately, this is my week off, so there is nothing to shorten! I’ll call the advice nurse tomorrow, maybe they have some serious pain medication. Tonight I’m praying for sleep…

Tuesday, June 30, 2009

On Chemo treatment 9 (6 to go) it took 4 tries to get a good IV going. Three different nurses tried, one of the tries left a big swollen bruise. At the end of the treatment, Nurse Toni discussed my getting a port inserted. Jessica had heard of it before and was all for it. Toni put in a request to the doctor, it was approved and set up for today at the hospital.
Bright and early this morning, Debbie took me to St. Agnes Hospital for the outpatient surgery. I took a refreshing nap and I woke up with a port installed below my right collar bone. Now my IVs and blood draws will be taken from this little two door spot without stressing out my hand veins. The port can last a year. I recommend getting a port to people starting out on Chemo therapy, I wish I’d done it weeks ago. This link will tell you about the mediport: http://www.markfuscomd.com/port.htm

Good News Monday

Monday, June 29
I like my Monday Chemo days. I get to meet with my doctor and she gives me good news. Monday’s good news was that the IGA spike (that is the peak of the graph of the bad protein in my blood) is no longer a spike, but is flat. That means the Chemo treatment has done what it is supposed to do. (This is treatment 11; 5 to go.) The doctor was very pleased. I am sure it is the result of all the prayers being delivered daily! I’m looking forward to the meeting with Dr.Wolf (July 14) to see what that means for future treatments and prognosis.
George and I are back in Fresno and it’s the hottest week of the summer so far. That means the weather at Huntington Lake is perfect now that we’re gone! I had a good time there and felt productive. I didn’t accomplish as much as I did last year, but considering my physical state, I did pretty well. Our last full day there George and I took a walk and located an eagles’ nest and a prolific crop of wild iris; two awesome discoveries.

Table for Six - Thursday June 25

The spacious “Atrium Clinic” has its size limits. Jullie was my transport down the mountain for therapy today and my quilting friends wanted to get together with her too. Cindy hosted lunch for Jullie and me. We were soon joined by Mark,who had heard so much about our Forest Service Quilter friend, that he wanted to meet her. Maggie and Jennifer O. showed up with their sack lunches. So six of us were dining in the clinic! We had folding chairs gathered around a TV tray. Fortunately it was a slow day. The nurses maintained their kind, friendly, demeanor, and only reminded us a few times to keep the aisle-way clear. If I have to do Chemo therapy, my friends sure do make it fun!

Over the Hump

Today was the first treatment of the second half of my chemo therapy plan. That means 6 weeks down, 6 weeks to go. Today I've had 9 treatments and have 7 to go. My doctor says my blood numbers look good. My shingles have "cleared," but I still have the lingering pain. Doctor says to up my pain meds to manage that pain. We discussed the upcoming (7/14) visit with Doctor Wolf at UCSF and she assured me that he is tops in his field. "He writes the research papers that other doctors read," is what my doctor says. Another doctor, who is visiting Lakeview Cottages this week, confirmed that the work happening at UCSF is cutting edge. I feel good about that vote of confidence.



My friend, Jullie, who works at the High Sierra Ranger Station on Kaiser Ridge, took me to Fresno for my treatment today. We left Huntington Lake at 9 am and had a great drive to the clinic. Debbie met us there for the Dr. visit, and Jullie ran errands. I learned that I can get my treatments in the roomy "atrium clinic" even when I have doctor visits. Really this "atrium clinic" is kinda like a spa atmosphere. I wonder if I could get a pedicure while I "drip?"



Jullie brought us Costco berry, frozen yogurt parfaits for lunch - my favorite. Jessica stopped by for a visit too. Everyone is so friendly at the clinic, I have to admit that I enjoy my chemo days. That's kinda wierd, I know. When you consider that two out of three weeks are chemo weeks, chemo becomes "normal."

The drive back to Huntington Lake (1.5 hours) was full of girl talk and catching up with Jullie. I felt fine. Back at Lakeview I read my book in the sunshine and visited with some of our guests. My body feels a little shakey, but my mind is energized. Art came down the hill from Camp Keola and visited a little. I've made plans for tomorrow to go up to Keola to visit and to take my kayak out for a spin. We'll see if I'm up to following through on those plans tomorrow!

I continue to be amazed at my blessings (they are too many to count)! God is good. He has blessed me and my family with good friends, good family, a beautiful place to live, good people all around. Thank you to all who are praying. When I talk to you, I become aware of your needs and you become part of my prayer list. All these prayers make an intricate, beautiful web. I imagine that God is pleased with the network we form!

Quite the Crew!

June 6th was the day we "took down" my mom's classroom. We had such an awesome team! We got done in record time! Faster than I can ever remember before!

From left to right: Valerie, Mike, Destinie, Tanya, Kim, Katie, Aunt Cindi, and Me

aka The Dream Team!

Mike served as our muscle AND our height. He tossed those boxes way up there like they were feathers. Come to find out "As high as you can go" wasn't to be taken TOO literally. Our apologies to those of you who might have had to take the boxes that were too high down.

Cold Feet

Mom's feet (as do many other patients' feet) get very cold when going in for tests, treatment, even appointments. Those medical places keep their facilities cold here in the summer. We've gotten into the practice of taking a blanket (her favorite knit green stretchy blanket) to chemo and socks to chemo AND appointments. These were her socks for the MRI.Thought it was fun/ funny.
When waiting for the MRI results doctor appointment, I noticed that my mom and Debbie were wearing coordinating outfits! What fun! I couldn't let them escape before a picture!

Photos for Philling You In

I realised recently that due to the complex nature of getting photos from a camera, onto the computer, and then onto a blog, My Oh My multiple Myeloma is relatively devoid of pictures! I've been taking them, but they haven't all made it up. Here is my first attempt to amend that. More to come.
This is the "guest book" Dotty made. It is now filling with signatures and notes. What a clever idea! Don't forget to sign it when you visit!This was on the second "second day." Mom was doing a good job staying in bed and resting! It helped that visitors came to her! Cindy stopped by to show us the pain chip for the door to her Periwinkle Cottage and we noticed that her shirt was periwinkle too! Then we saw my moms hat and added it to the ensemble. We couldn't let her get away with out a picture. We were having too much fun!This was mom's first visit to Lakeview. We joked that she was holding court. She stayed in the cabin to avoid allergens and such, but that didn't stop all the social endorphins. Everyone came to her! I had to take this picture because she was looking so "red and navy blue." The Pinedale spirit never goes away! Here we are eating dinner at the cottages!

1 month anniversary

Hmmm. I’ve “had cancer” for a month. Seems like a very long month. On the other hand, it doesn’t seem like a big deal. God is doing a new thing in my life and I trust Him. I have had tremendous support and that overrides the “cancer catastrophe.” Thank you to all who have prayed, called, written, visited, brought gifts and food. The outpouring of care is overwhelming.

My doctor visit today was good. Hemoglobin was up to 12.8! Normal range. My body is producing more good blood. One of my chemo drugs gives me insomnia on chemo days. Another chemo drug makes me especially sleepy on the 4th day following treatment. I guess I’ll just go with it. My back pain is much better and my coughing is subsiding. Things are looking good. (Jessie gave me a Demerol shot so life is looking good all around!)

I have an appointment at UCSF with Dr. Wolfe, a specialist in Myeloma, on July 14. He will review my treatment to date and run more tests. He will meet with George and me and make a recommendation for further treatment. I am sure we will discuss prognoses. He has been and will continue to communicate with Dr. Garley here in Fresno.

I don’t really know what is in store for me until we meet with Dr. Wolfe. It’s hard to make plans regarding teaching. Right now I’m counting on starting up in August, fifth grade, just like usual.

Interesting things always happen during treatment. I got to meet my ”myeloma twin” today. We are both 50ish white females who don’t fit the usual profile. We were diagnosed within one or two weeks of each other. Talking with her makes having myeloma more real. I also had a surprise visit from our school nurse and two special students. That was cool. The nurse helped my students make a ceramic tray filled with thumbprint hearts and the students’ names. They also brought get well cards. The best was talking with the students. I miss my kids (eyes well up here). I feel bad that I ditched them these last 6 weeks. I hope they and their parents understand. Shelley was my “escort” today. I enjoyed catching up with her – Sundays at church just aren’t enough.

It’s late, I’m not sleepy yet….

Three nap Sunday

Church is essential. My church family is so supportive that I need to be there to absorb it. I feel Gods’ presence through the touch of my friends. This, too, makes me feel emotional. All this emotion must be making me tired.
We came home from church, had lunch, and I slept on the couch. A friend came by for a visit, then I took a late afternoon nap – same couch. The girls left for an evening activity and I took a third nap on the same couch! I woke up at 9:30! I sure hope this is healing sleep because I'm doing a lot of it!

Normal

Cindy drove to Huntington Lake. George was already there, working in the snow. Cindy and I stopped at Shaver Lake to check out the gift shop, then we stopped by the sporting goods store. That’s when I saw the four, big, beautiful boxes. I even gave them a hug. They were four brand new Honda outboard motors ready to go on our Lakeview fishing boats. They make me really happy because they will be no maintenance (by me) and will make our guests really happy.
Saturday was warmer, but no sunshine. I cleaned out our cabin then helped train our new managers. It was good to see the new guests. On the way home we stopped at Lakeshore for a hamburger.
This is very un-interesting for a blog. It’s normal, but I am so satisfied with normal right now. Normal makes me happy, it even makes me emotional. Sometimes it makes me cry.

Thursday, June 4, 2009

Today’s therapy at the clinic really was fast-track! Maggie and I were really impressed. The nurses are so efficient. We were in at 9 and out by 11:30. Of course, I’m not getting the Demerol IV any more, so that speeds things up. Also I had no bloodwork or doctor visit.
Maggie took me on some of my errands including picking up a prescription and groceries and I was home by 1:00. Wow!
School is going really well (for me – I’m not even there!). My sub is great. She entered all her own grades. My grade partner Jennifer is the best. She helped Bria gather all my grading information and helped us with the print outs. Bria and I were just talking over the phone and printed up other reports and made sure I have everything I need. Jennifer is dropping everything off at my house. Hopefully, this weekend I’ll fill out the report cards. Done!
Even though the chemo makes me dizzy and feel weird, it is so nice to have a semi-clear mind! I am feeling grateful for many blessings!

Monday Doctor Visit

Today is the start of round two of 4 rounds. After a week off Chemo therape, I start over again. We met with Dr. Garley first. Remember that IGA (blood protein – the bad guys) spike? It started out at 2306 and looked better last Wednesday. Well the latest number is all the way down to 706! The goal is 378 and no abnormal cells. That is good news!
Because my numbers were so good, doctor reduced the amount of chemo I would take this round. She also eliminated the Demerol from my iv drip. The bad news about that is I don’t get that “all is right with the world” feeling. The good news is that I really do feel what the chemo is doing to my body. I felt kind of tingly and dizzy. It seemed like if I turned my head I would fall over. It’s good to know how things affect me.
We also met some nice people at treatment today. One lady came from Missouri to visit her aunt. She had an awesome quilt top she had made. She hadn’t had time to layer and hand quilt it, but she wanted to show her aunt. I have the photo on my cell phone. I have to figure out how to get it to my computer.
At home, I thought I would nap. My body wanted to lie still (very still) but my brain didn’t want to sleep. I listened to the flute ensemble cd (given to me by the Ewerts and featuring Dotty on harp), very relaxing – still no sleep. Patti came by with our teacher book club selection: The Curious Incident of the Dog in the Night-Time by Mark Haddon. Very different, interesting book. I'm not done with it, but I recommend it.
Now I am oficially rambling, so I'm done.

We are proud to announce…

We wanted to be home for church today because the graduates were being recognized. We have a graduate – Jessica has her BA in Liberal Studies. George also got to stand up and announce that our daughter, Jessica is engaged to be married to Luke Nickodemus. That was a fun moment for our church family. I did go home before we were dismissed – trying to avoid the whole germ thing.
Valerie’s friend, Matt, (Jessica's Note: friend=boyfriend in our family) was here this weekend and we enjoyed his company greatly. He brought me up to speed on chromosome information.
We also had a nice visit with Steve and Lois. I love Lois’ take on her cancer experience. She says it was the hardest thing she’s endured, but she wouldn’t trade the experience for anything, because God used the experience for good. All day today I was reminded how much we value our church family. This would be a hard experience without their support.

Saturday

Shingles are itchy! I mean drive you crazy itchy. I woke up in the night and made some ice packs to at least let me sleep. Maggie was again my “Florence Nightingale” and rubbed Sensitive Sarna anti-itch lotion on my back. That’s good stuff – really eliminates the itch. I was able to do some work in the office at Lakeview Cottages. I then worked and putting the name decals on the new kayaks: the Cindy Lou and the Maggie Mae. I had a productive day and again was encouraged that I had energy by the end of the “off chemo” week. I’ve been managing the car rides up and down the mountains by sleeping through them.

Friday evening

Mark and Cindy were kind enough to give me a ride to Huntington Lake. George went up the day before and was working at Lakeview. I couldn’t believe how good I felt when we got to the lake (I did have a good nap earlier). George and I walked to the dam and back, then used a boat to haul a drifting tree away from our water front area. What a difference a week makes! I was so encouraged that I had the energy to get around!

Friday

Today was my grade-level planning day for school. My teaching partner is moving to first grade next year – I will miss working with her. We collected our curriculum calendars and made sure they were all up to date. It was good to be on campus, but it was hard to see the kids and not give hugs. Jess was frustrated with me for going to school at all because my resistance to germs is about zero. First thing Jennifer & I did was sanitize Kristen’s (far away from the kids) office and wipe down my laptop computer. We took a break for lunch where we got to meet the new 5th grade teacher, a transfer from another school. I’m sure we’ll make a great team. After lunch – nap time.

Thursday- Shingles go on houses

Today I was feeling pretty good and ran a bunch of errands. I met friends for lunch. I was describing my side-effects and mentioned the painful bumps on my back. Nurse Practitioner Jennifer immediately made a diagnosis – shingles. What do you know? I’ve never had that before. Apparently they’re contagious, too. Nobody can really explain the contagious part to me. I do know that when I went to the doctor, they suggested I sit in the hallway until my doctor could see me. So, bunches of pills later, I’m treating my shingles.

Wednesday, May 27- quilting and doctor appt.

Quilting Margie took me to quilting – her first time. She was quite a gal at Jennifer’s big stitch quilt. I’m working on the quilt with vintage Dresden Plates. I’m not very fast, but I think my stitches are still ok. I noticed I was pooped out after about 45 minutes though. Must be all the excitement of busy ladies working and chatting and sharing good thoughts!
Even though this is a week with out chemo, I had a doctor’s appointment. Nurse Debbie has committed to going to all doctor meetings with me. She takes notes and asks for clarification when my eyes glaze over. This is a huge gift she is giving me. Jess met us there. So here’s what Doc Garley says:
MRI = kidneys are good, cortex of my bones (outside covering) is solid.
I do have holes or pits (from the cancerous plasma cells) inside my bones. The holes caused my back pain. The holes cause changes in the anatomy or structure of my skeleton. I have no large chunks of bones out and no “impending” cracks. My body is not the same as it used to be! I do have small groups of myeloma cells which are called tumors, but these are very small.
The plan continues to be to treat the myeloma with chemo, avoid radiation, then build up the bones. I asked about chromosome #13 and Doc Garley showed me pictures of my chromosomes. Yes, #13 is abnormal which indicates Multiple Myeloma, also irregular are nos 4 and 15. She says this means my Myeloma is harder to treat. We also talked about my IGA - the bad protein (plasma). She calls it a “spike” in the scan – on 5/11 it was 2306. Our goal is to get it below 378 with no abnormal cells.
I know that learners have to hear something about 7 times in order to take it in and consider it learned. Today was a good day for hearing things again. Today’s doctor visit was more of a “state of the body” meeting. I took in a lot more. When I got home, I read through the information from the internet and the pieces came together more. I felt like I could take a little more ownership of what is going on inside my body.

More effects of chemo therapy are setting in: acne – not just for teenagers! Neuropathy – numbness in my feet and hands. For me, my feet feel cold all the time. Wednesday night I found a ring of bumps on my back. An ice pack on my back helped me sleep.

MRI

I had my first MRI today. I thought I might be claustrophobic, so my plan was to take a nap during the procedure. After I got all checked in, and the nurse said I was good to go, I took a few of my handy meds and settled in for an afternoon nap. Jessie’s shoulder was a great pillow while we were waiting. Then I finally got to meet the big machine. I laid down on the bed, asked for classical music, and took a nap. My friend, Sue G., recommended keeping my eyes shut so I don’t feel the closeness of the tube. That worked and the whole procedure was quite painless. Jess & I got drive-thru burgers and shakes on the way home. After lunch, I finished my nap. Mission accomplished!
Many thanks to Karen & Max for dinner tonight - Minestrone soup with all the sides - yum! Max brought his home canned applesauce and it is HEAVENLY! I mean it, this applesauce is tops. Samples to anyone who shows up tomorrow!

Beautiful Memorial Day Weekend!

The last few years at Huntington Lake (7,000 ft elev.) we’ve had snow, sleet and rain. Some work gets done, but mostly we hunker down in our cabins. This year, however, was beautiful! I mean everyone else sure missed out! The workers (not me) got so much done and the resort looks great! Our group had over 20 trout for Saturday dinner! Even the kids were catching their limits!
It was a good time for me because my job was to rest. I’d visit with friends, then I’d snooze for a few hours under my down blanket. It was great to see friends and be bouyed by their love and concern. I ventured forth a bit on Sunday and Monday. I walked the length of the campus and checked out the water front. Mostly, I ate and slept. A good time was had by all!

Thrush is for Newborns...

and apparently adults undergoing chemo! When I woke up this morning I was pulling flecks of lint out of my mouth. I just want to say that I practice good dental hygiene, and I did brush my teeth last night. I went to the bathroom mirror and looked in…. oh my gosh – it looked like a flannel blanket in there! My tongue, gums, cheeks…well, you get the picture and it isn’t pretty. I made a frantic call to my chemo expert, Jennifer L., who confirmed that it does happen. After a massive brushing job I feel a little more human. My tongue is sensitive though, I guess that’s what that was all about. Also I have a sore throat and am on antibiotics – remember the long clinic visit yesterday – well worth it in retrospect.
I did find pollen face filters – apparently the swine flu has caused the “oh, so attractive facial accessory” to be in short supply. Were headed to the mountains shortly.

Coffee, tea...

Oh! A funny thing happened at the “slow” clinic today. I told Maggie they have baskets of goodies to eat – wrapped cookies, crackers & cheese, chips, dried fruit… I really wanted some salty chips, so we sent Maggie on a mission to find the basket. We thought it would be in the “atrium” room. The basket in our room had socks in it – nice thought, but not very filling. So when Maggie returned with the food basket, eyes brightened up all around! She got to do the flight attendant thing with other guests (confined to their recliners and IV lines) around the room. She made several people happy. Pretty fun! That’s one of the reasons it’s so great to have a friend with you!

To the end of the line, please.

Today should have been my “fast track” chemo treatment through the clinic. No blood work, no doctor visit, pass to the front of the line! Maggie was my “escort” for this fast trip. The only hitch is that I have been having shortness of breath and a slight sore throat. I wanted to check it out with the nurse since we’d spend the weekend at Huntington. So goodbye fast track, hello end of the line!
Everything was fine, just slow. I got some anti-biotic for my throat, which should help my breathing. Because I saw the nurse, they wanted to check my blood. As we were wrapping up, I noticed that my blood HGB was 11. On 5/11 it was 9.4 then 10.0 on 5/18. The nurse asked how that happened, because I hadn’t received any Procrit since the first treatment. I told her that I guess we’re killing off enough of the bad guys to let the good guys grow. I don’t know if that’s the truth, but it’s my story and I’m sticking to it!!!
Please pray that I don’t get too much pollen at Huntington Lake and that I stay healthy. Thanks friends, I am truly lifted up by your prayers. I appreciate you so much. I am so happy to see the MacLeods checking in! I miss you guys!

Wednesday is Quilting

I’m finding that the second day following chemo is my hardest day. Last week I slept through Wednesday. Today, I made it to quilting! I didn’t do too much work, but at least I got there! It was so great to see the ladies; it felt like a great big hug! I make it to quilting only about twice a year, but these ladies make me feel so loved and welcome.
When I got home, I had the best potato soup ala Niece Tanya, and then took a nap. It was a long nap with weird dreams. And now I’m rambling, so it must be bedtime! What a life?

Tuesday

Tuesday was a productive day. I accessed my school e-mail and cleared a lot of business out of my in-box. I responded to several people and gave them my blog address. Boy, was I being efficient. That evening I realized I had given all those folks the wrong address. Bummer – Even when I think I have a clear mind – it isn’t!
I did pre-register for my MRI which will happen Tuesday, May 26. The nurse who took the info over the phone said I am taking so many meds that they may decide not to sedate me for the procedure. As I’m a little nervous about the whole claustrophobia thing, I’d appreciate prayer regarding the MRI and that I will be calm.
We finally checked our street mail box – it had been nearly a week. I was overwhelmed by the number of cards bringing greetings and well-wishes. Thank you everyone for those. Also delivered was a devotional dropped off by our Pastor, James. It’s called Praying Through CANCER, Set Your Heart Free from Fear. Here’s the cool part, it has an entry called “MRI: Mini Roll Insertion.” It directly addressed my MRI fears – how cool is that?
Jessica gave me a shot of Demerol at bedtime. She did a great job, I didn’t feel a thing!

Monday Continued

I had a lot to say today before I went and got all emotional on us. The doctor says I look good. We still have some concern about the pain I feel when I cough – sooooo… cough syrup with codeine and throat lozenges. I’m all set for the MRI a week from Wednesday. Debbie RN had the good sense to ask about my HGB: Last week was 9.4; this week is 10.0, the medical people seemed to think that was good. I’ll take it!
The treatment went well, meaning I wasn’t wiped out. Cindy was a good friend – we talked some, she worked some, I dozed some, she found the snack basket for me! We sat in the “clinic.” We think it should be called “The Atrium”, because it has one and is very nice. We found one treatment room that we called “The Den” because it had a tv and two older guys hanging out in it (actually their IVs were hanging, yuk, yuk). We plan to work on this whole "theme room concept."
At home I took a nap. Dinner arrived in style: Tomato Basil Bisque ala chef Nathan, Caesar Salad, rolled sandwiches and to top it all off (drum roll here) Banana Split Ice Cream from the carton. Thank you all. If food will make me healthy, I will have a clear bill of health in no time!

Picking Sweet Peas on Monday While Everyone Else Sleeps.

Today – good!!! I wake up several times in the morning. This morning – 3:00 take my thyroid medicine. I notice that my head feels a little clearer – this is good. I have a funny sore spot in my throat , so I make some weak tea. I write some thank you notes. This is a great thing to do because I get to think of the giver and the special gift all over again. I decide to take a nap. A nap at 4am? Well, I am on sort of an infantile schedule. Wake up again – get the paper, another cup of tea. Check out my feelings – still alert, some pain when I walk – evenly across my hips – what do you know?
It’s warm outside, but overcast this morning. My sweet-peas are beginning to bite the dust (are you smarter than a 5th grader?) I pick some sweet peas and leave the bouquet on my porch for Cindy (Beware of allergic people who live here). Wow! Good morning world)
Unexpectedly saw friends at the St. Agnes Oncology Clinic. They have positive things to say about their treatment. This is the part I love best, “Come on down to our house if you want to talk about things.
I think I’ll take you up on that, I would love to talk about things… Like I wish I had supported you during your illness….And how welcome your parents made me feel when I was in college, and how your mom taught be to quilt and gave me her recipe for Mennonite peppernut cookies... I think I would like come on down and talk about things.
OK I’m feeling a little sentimental here. I better take a break.
God blesses us through the good people he puts in our lives.

Update From Jess

Saturday, the 2nd day after chemo, went better this time. Mom was more ready for it, and therefore willingly rested. She kept up on her fluids and when she got sick of bed/the bedroom, she moved to the living room couch. I put on the movie 21 which she had started B.C. and wanted to finish. In the afternoon she finally decided she was ready for some pain meds which I was able to inject for her by myself (under the supervision of Nurse Practitioner Jennifer.)
Sunday (today) is the only third day after chemo she gets a week. She was able to make it to the first service at church and that made her really happy. I think its hard to be home for such a long chunk of time. I could understand going a little stir crazy!She rested, then visited with her teaching partner Jennifer L. and John (Jennifer's son). John helped me finish a book I was working on. Later today mom made it over to a family gathering Aunt Maggie was hosting. Cindy W. was thankfully available to bring mom over late and take her home early so it didn't wear her out too much! She's resting now and hopefully will be for the night. Tomorrow is a chemo day.
PS-Prayer Support- Please pray that her coughing will subside. While it doesn't seem to be that noticeable to us, it hurts her a lot to have any little cough because it kind of jolts her body.

Thank God it's Friday

Friday is a good day. During a visit from NPT Jennifer, we figured that some coughing would be good to loosen up my chest. Some coughing would not warrant being knocked out. I did take a morning nap though. Do they allow those at school? I think I need two per day. What do you think, admin team at Pinedale, is that ok? This question may impact my ability to return to work, humph.

Dad & I had a nice breakfast together -oatmeal, raisins, brown sugar. I was trying to fill in the shopping list and discovered that I can't think of a darn thing! Now, what are those little round oat things (no, not puffs) that float and they're good for you...and moms like them....Cheerios! I wrote it down. We agreed that life these days was a lot like playing that game where you count the letters, but don't talk, and stretch it out, and pantomime and... what is that game??? No not scattergories, how about Charades! That's it! I may still be smarter than a 5th grader, but I'm definitely not speedier.

The Blodgetts brought by some beautiful blue hydrangeas in a pot. I watched more humming birds out the back glass door. Guess feeding them was a good idea! Watering the potted Hydrangeas was a good idea too. I can take care of these guys! If you feel you must send a potted plant: hydrangeas and violets are good! (silly me for asking - I'm becoming blunt - oh yeah, I already was that.)

Jennifer L., Kristen, Allison, & Hollie and Jessica are awesome! They entered my grades, graded my idiom books, and are entering my grades into my electronic gradebook. Even some students helped out! I am so relieved! They also already took care of my student assignments for next year. What a great group. Just goes to show that no one is really irreplaceable. Good people step in to help. I think of a study at church I took - David & Jonathon. The point was: God wants us to have close friends who will do anything for each other. I am finding that my friends are willing to do anything for me (Debbie F. RN said she was willing to give me the pain medication as a suppository, but I opted for a pill under the toungue.) I am learning what it is like to accept (help, food, advice, gifts, time, etc) from others and still figuring how to be gracious. The act of give and take heaps blessings on both sides!
Thank you for your on going prayers. If I wasn't sick, this would be fun. But then we'd all be working too hard and wouldn'd be getting our paying jobs done. OK, everybody! It's nap time, go take a nap!
PS - Prayer Support - Please pray that Saturday (the second day, goes better than the last "second day." We're trying to figure out my pattern. Thanks!

Lotsa Helping Hands

Since my mom was diagnosed we have heard a lot of the question: "Is there anything I can do?" and we have had a lot of great assistance with meals, and getting my mom to and from appointments, even getting perscription. This has been a great blessing, but we have also at times had more food than we could handle. As suggested by the book How Can I Help?: Everyday Ways to Help Loved Ones Live With Cancer I created a calendar at Lotsa Helping Hands. The website allows me to invite people by email and they can, in turn access the calendar, view any form of need whether it is shoping for a simple item, or getting Mom to an appointment. I have added several itemsallready and if this seems like it will work, let me know and I will continue to use it. To be added to the Lotsa Helping Hands community I created, email me ( Jhrme@comcast.net ) and I'll send you an invitation. My computer is on the fritz so I don't have all my email addresses at the moment.

*Update: Mom was pretty with it this morning. She kind had so congestion and it hurts her when she coughs. She says she primarily experiences pain when she coughs. She doesn't like seeming so out of the loop when she is medicated, and is having a hard time "letting go of school." She really wants to be there. We had a good visit with Grandpa and he left this morning. It was good to have food to share while "entertaining." Dotty brougt over a "Guest book" quilt. If you happen to be stopping by, be sure to sign it with the pens on the quilt. She may not remember to ask you but it will be good for her to have.

Update From Jess (on behalf of Sue)

Home from Chemo. This was Jess's first time with me and meeting my doctor. Feeling better. Still very sleepy. Had a fun visit from Holly and Allison. Debbie was my consistant note taker. Still small apppetite. Enjoying popcicles, and diluted cranberry juice! Contemplating soup. The pain meds are working successfully.

Quick Update From Jess

Today was more of a rough day. She was pretty loopy. More chemo tomorrow (Thurs.) Please pray for her pain to go away, that chemo goes well, and for my grandfather's safe travels (he's driving down tomorrow)! We are very grateful for Jennifer's pain med injecting abilities! This one is short because I have a presentation tomorrow morning. More details to come!

Taking Inventory

Taking off Tuesday and Wednesday was the right thing to do. I needed today to “take inventory” of what’s going on and see how I’m feeling. I wanted to eat right and get organized. While I was eating at the kitchen table, I noticed several humming birds check out the feeder. The feeder has been empty since January. I took a bold step forward, cleaned it out and re-filled it! I answered some phone calls, cleaned half a window, and sent out a greeting card (my goal).
All in all, a pretty normal day except that I stayed in my pajamas until after my 1:30 nap! I had my hair cut by Becky. Isn’t it amazing the way hairdressers become such close friends? She has her own health issues – we know so much about each other that we just talked non–stop! After getting back home I had a visit from Deb B. who is just finishing up her treatment for breast cancer. We compared notes, but mostly we talked abut the lessons we’ve learned and the many blessings we have because we are members of a great church with a super church family.
Again, I have to say that the contact I have with people help me be positive. I confess that in personality tests I usually stand out as an introvert. I’d rather read than get on the phone, I’m not really good at hugs and saying “I love you.” (Please be gentle with my true confessions here.) This may be the lesson God is teacher me: Get over it with the introvert thing! I need my friends. I can’t tell you how good the endorphins are for my well being. The pain and trouble just about disappear when I hear from my friends and family. Whether it’s a phone call, text message, blog comment I feel so blessed. The sweetest words are, “I’m praying for you and your family.” Thanks – I love you!

Here We Go

Monday, May 11 First Chemo treatment. George dropped me off. Deb met me as my designated nurse, scribe, and friend. The pain in my back was the most severe to date - I felt lousy. We waited for the doctor in an exam room - Deb dimmed the lights and tucked my blanket around me. I felt so crummy that I called in to school to take Tuesday and Wednesday off, too. When the doctor arrived she answered all my questions. She says I'm probably at stage 3 (I don't really know what that means, but somebody asked me). My kidneys are in good shape, by heart is good. I don't need more blood transfusions; they will give me procrit to increase blood production.
So, I had Demerol in my iv drip - that was good, but I couldn't do anything that required thinking, so I rested. Deb went to get lunch and pick up my medications at the pharmacy (She was super!) Pretty soon Patti, Laurel, & Jennifer from work marched in. So I'm in a room with about 12 other patients and these friends bring this HUGE basket of goodies and a Huge bag with Lena's green afghan. I wonder if the regulars could tell who the new patient was? Having these three live-wires (and the Demerol) made me feel much better. They brought me out of my funk, and I really started to feel much better.
The good things that happened today: Deb was my "personal assistant." My Pinedale colleagues are the best! Lena knit me a really big green afghan that will stretch and wrap all around me. I love the gift basket ( cursive book, word search, saltines, magazines (wide variety: quilting –Cosmo) and so much more, Dinner from Anna & Patti, Phone calls, so many friends offering up prayers. I feel very well taken care of. I am truly blessed!

My Life B.C.

This winter, I found that my colds were lasting longer, coughs were lasting longer, and when I coughed, I had a sharp pain in my lower back. A few weeks following the last cold, I developed a persistant pain in my hips and lower back. I thought it was nerve problems, I visited my favorite massage therapist (Annie), I stretched, I exercised to no avail. Finally I had my annual exam on April 28, they took blood and my cholestoral was abnormally low. My doctor called me personally that night. (Note to friends: When your doctor calls you in person, at night, it's not usually good. Especially if she's getting you in to see a Hemotology Oncology Specialist immediately.)
The appointment was at 8:30AM Thursday 4/30, we talked, THEN she wanted a bone marrow biopsy. After calling people to pick me up, we next headed to St. Agnes Hospital for a blood transfusion (I was only 1/2 full.) I got home after seven o'clock PM.

Monday May 4: X-rays of all my bones

Thursday May 7:
I had a follow up appointment 1:00 PM .
11:00 am that day the doctor (herself) calls to find out if I would like to come in a little earlier.(Note to friends: another personal phone call from the doctor.) I declined because I was headed to lunch with my girlfriends and that was IMPORTANT!
After lunch I met George and we went in for my appointment.
The doctor told me that I have Multiple Myeloma and filled me in with about as much as I could handle that day. George was very good at taking notes and asking all the right questions for me.
She did tell me that I will be having IV chemotherapy treatments on Mondays and Thursdays for two weeks and then one week off. This cycle will repeat 3 more times and then we'll see.

More updates to come after the first round of chemo tomorrow, and a full nights sleep. The updates will be coming from either myself or my daughter Jessica.