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Day 0, Dec 17,2002

Last revised:11/11/2004

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My Breast Cancer Journal

 

Hi, I am Strawberry Sue and this is a journal of my recovery from breast cancer.I donít know if it will help anyone else diagnosed with breast cancer.Itís mainly for family and friends to read so I donít have to keep answering the same questions over and over.

 

Thank you to all who have sent cards, flowers, gifts, watched the boys, and other offers of help.Itís wonderful to know that I am blessed with such terrific friends and family.

Grady, Riley, and Strawberry Sue

 

If you want to start at the beginning, then go to the bottom and read your way up chronologically.This journal has gotten so long (about 15 printed pages), that I created a one page summary.

 

November 11th, Day 700

I can no longer suck on a straw, and can barely swallow. Iím getting soluble morphine and adavan every 4 hours to keep me relaxed and the pain in check. At 6:45am, I stopped breathing and died. I was in the peacefulness of my own home with my husband and my loving family nearby when it happened. It was a painless and relaxing death. [Last 8 entries made by her husband Mark. We will all miss her terribly]

November 9th, Day 698

The doctors had me scheduled for a pleuradisis yesterday, but a senior oncologist approached us and said she didnít think it was worth the risk. She said there is cancer infiltration in the lymph layer of the lungs which is preventing me from getting oxygen into my blood. There is some fluid around my lungs, but this procedure may not relieve the symptoms. The recovery time after this surgery will be a week, and it makes the lungs painful. They are also afraid that I may not wake up from anesthesia, and would be on a respirator for a while. So I decided to just go home where I can get pain medication whenever I want it and not when the nurse happens to get around to seeing me after pushing the button. Iíd rather die at home than in the hospital, but it would have been nice if they figured all this out on a few days ago when it would have been easier to go home. I went home via an ambulance, since I need so much oxygen now.

November 4th, Day 693

Checked into the hospital and had to wait an hour in the lobby because they didnít have an empty bed yet. I finally got a room and they did a CT scan of my chest that evening. Iíve also switched to an oxygen mask, since the nasal canula isnít keeping my levels high enough. It also makes me feel like Iím getting air better than the canula.

November 3rd, Day 692

I went in for chemo, but my hemoglobin levels were too low and my breathing was worse. They took an X-ray and I saw Dr. Livingston since Dr. Ellis is in Europe. He is very nice and explained things very thoroughly. He said I needed a transfusion to get the hemoglobin up (which should increase my energy level), and that I should really go to the hospital to see what could be done for the fluid in the lungs. I wanted to get my port de-accessed so I could take a normal shower, and then go to the hospital. He also said it looks like the Taxol isnít working, since my lungs are worse. So no more Taxol, and this was the last chemo they had to use.

October 26th, Day 684

I visited the Seattle Cancer Treatment and Wellness Center. This place combines natural solutions with drug solutions. The naturopath recommended some protein additives, cod liver oil, and a few other things. The doctor said my cancer was becoming unstable and that things donít look good. He suggested combining Carboplatin and 5FU with the taxol and getting off of the cytoxan since I had it a long time ago. The ďplatinĒ family of drugs was what caused my breathing problems before, so Iím hesitant to try this.

October 25th, Day 683

Iíve been home for a while now and have all kinds of new stuff Ė a hospital bed with power back and feet, an oxygen generator, IV antibiotic (my chest tube site is infected again), and lots of morphine. I donít eat much or do much, but it is better than being in the hospital. Iím just waiting for this ďalienĒ to shrink so I can take less pain killer and eat normal again.

October 11 through October 15, Days 669 to 673

Hospitalized because of intolerable abdominal pain (and my abdomen is quite large Ė I think I have an alien growing in there). Doctors think draining the fluid is too dangerous, so they hope that the chemo will reduce the fluid production. They also pumped me full of every laxative known, since they thought being constipated could cause the pain too. But in the end, that wasnít the problem. Now, Iím continually taking morphine to control pain and have low level oxygen.

October 4, Day 662

Having abdominal pains. CT scan shows a thickening of the omentum (a membrane rich in lymph and blood vessels that surrounds all of your guts) and ascites (liquid filling around the intestines). Oncologist thinks it is due to cancer infiltration pumping liquids into the abdominal area. Doctor was ready to give up, but realized Taxol had not been tried. So we changed chemos to Cytoxan (daily) and Taxol (weekly). Will also be taking Zometa to harden the bones.

September 15, Day 643

Now I'm on yet another chemo (Gemcitabine or Gemzar). This better be the Gem that I need to kick this cancer. Slowly weaning off the steroid, and lungs arenít getting any worse with fluid.

August 24, Day 621

Mom took me to get chemo (Gem 4),I'm feeling better, still get winded after walking around.Only have 50% of left lung, since they couldn't get all the cancerous fluid out.Am taking steroids to help get my right lung back up to 100%.

August 18, Day 615

Mark went with me to see Dr. Ellis.Todayís Xray looks just like the last one in the hospital.She lowered the dose of the heart pill the hospital doctors put me on and is continuing the steroids.Without the Cisplatin, Gemzar is 3 weeks on and 1 week off.

August 16, Day 613

Mom took me to get chemo (GEM 3).I was very paranoid about my lungs, but I did okay.

July 24 to August 10, Days 590 to 607

Not sure how many of you heard what actually happened in my 17 days at UW hospital.Mark couldnít stand my not breathing and took me to the ER, where they admitted me.Doctors drained 4.5 liters of fluid from my left lung.I still have a hole in my side that is healing slowly.The doctors think 1. too much fluid came from new chemo (Cisplatin);and 2. radiation lung side effects (pneumonitis); were the problems. It took them over a week to figure that out.During that week, my heart and lungs both freaked out.It was pretty scary.I had one chemo treatment (GEM 2) on July 28th.Then they gave me 2 weeks off to recuperate.

July 21, Day 587

Mom took me to get new chemo Cisplatin and Gemcitabine (GEM 1).It took 6 hours because they infuse lots of fluid with Cisplatin.Iím really having trouble breathing and attempted to setup the drain of fluid at UW hospital.

July 16, Day 582

Mark went with me to see Dr. Ellis.I didn't have chemo on Wednesday because my blood counts were too low.Per an X-ray, the pleural effusion (fluid build up between the chest cavity and the lungs) is getting worse, and my breathing is getting more difficult. I run out of breath going from one end of the house to another. This is most likely due to cancer in the chest wall pumping out protein filled liquids that have no place to go. So Dr. Ellis decided to change chemo's again. Now Iíll be taking Gemcitabine and Cisplatin. This stuff is 2 weeks on and then 1 week off. It will also take longer to do (about 3+ hours).

 

The doctor can relieve the fluid in my chest fairly easily, and if my breathing doesn't get better in a few days I may have it done. However, until the cancer stops pumping liquids there, this is just a temporary relief measure that will have to be repeated.

 

Iíve gotten so far behind in my journal that I just decided to add this update.I spent a miserable June healing from radiation burns, unable to swallow, and getting chemo (CPT-11).

 

May 21, Day 519

Attended the Kent Relay for Life Ė Our Team was comprised of school teachers, parents, and several survivors.

May 17, 18, 19, 20, 21 Day 515, 516, 517, 518, 519

More radiation treatments (RAD #15-19).Saw Dr. Ellis at SCCS on 19th, with mom. (CPT-11,#12)

May 10,11,12,13, and 14 Day 509 to 513

More radiation treatments (RAD #10-14).Deb went with me to UW for chemo on the 12th (CPT-11,#11).

May 6,7, Day 505, 506

Dad went with me to UW for radiation treatment (RAD #8).They added the 3 field from my back.I went to treatment alone on Friday (RAD #9).I am now getting 8 zaps.ďHere we goĒ as the technicians say every time they leave the room and close the foot wide door behind them.

May 5, Day 504

Mom went with me to the UWI had radiation (RAD #7) after my blood draw.My blood counts were high enough that I had chemo (CPT-11, #10).

Back at home, Mom went on-line to the SCCA cancer profiler.After entering all the pathology report information for Dad, it just confirmed what dad had already decided on, Radiation.

May 3,4, Day 502, 503

After treatment on Mondays, you see the doctor.There wasnít anything to check after only one week.Dr. Yao told me to keep applying the gel they gave me. During radiation treatment, they did a filming of 3 more fields into my back.(RAD #5, RAD #6)

April 28,29,30, Day 497,498,499

Mom went with me to the UW.First I had my blood drawn in the Infusion room at the top of the Mullenburg Tower.Then I had my second Radiation treatment (RAD #2).When we got back to infusion, nurse Som said that my neutrophil blood counts were too low to have chemo.This actually was a relief for me.

I had radiation treatments (RAD #3, RAD #4) on Thursday and Friday, with a physicist (Arnie) placing diodes along with my setup.This is to measure that I am not getting too much radiation.

April 26,27, Day 495,496

The only double treatment time available was 2:15 every weekday afternoon.On Monday was the dry-run, where they set up each radiation field.Instead of zapping me, they took films for the doctors to verify which took a couple more hours.On Tuesday, I finally had my first treatment (RAD #1).For 5 times they set up and zap me.With 40 second zaps, the total time for treatment is 30-40 minutes.The treatment technicians are Olivia, Robert, Angus, and Ellen.

April 21, Day 491

Dad had met with Dr. Schoenrock to get results of all the testing for his enlarged prostrate.Although none of the X-rays or CT scans show any tumor, 4 of the 9 biopsy samples showed cancer.Dad did lots of reading to help decide on surgery or radiation.

Mom took me to SCCA.I had Chemo (CPT-11 #9)

April 19, Day 489+

Sallie and I met with Doctor Michelle Yao and resident Doctor Haleigh Werner.Since chemotherapy is not holding the cancer growth, we will hit it hard with radiation also.We will radiate all known disease, which due to the human shape will be complicated.The lymph nodes in my neck, right armpit, and center chest will get treated deeper.My left chest and armpit will get non-penetrating electrons to avoid damaging my heart and lungs.Radiation damages all the DNA it touches.We wonít know for a few weeks after the 6 weeks of treatment whether the cancer repaired itself like normal tissue can or not.

They werenít kidding about the treatment being complicated.I spent 8 hours over 3 days in that week of planning sessions.They made a cradle for my upper body, but it was still like torture.I had to hold my arms above my head and not move while they marked all over my chest.I ended up with 11 tattoos.The planning people were Sharon, Lei, Renee, and Tammy.

April 16, Day 486

On Friday, the scheduler for Doctor Yao called to arrange for a Monday morning appointment and radiation planning session at Cancer Center in basement of the Pacific Tower at the UW.Doctor Ellis also left a message, but I missed her call.

April 14, Day 484

The boys, Mark, and Markís parents (Bev and Ralph) went with me to SCCA.Mark and I spoke with the doctor about my CT scan results.None of my lymph nodes were any bigger, but my left lung was partially collapsed.For fear that the cancer is pressing against my left lung, Doctor Ellis said she would talk to her radiation colleagues at the weekly tumor board.

I had Chemo (CPT-11 #8),Bev and Riley stayed with me.

April 7, Day 477

Deb went with me to SCCA.I had a CT scan of my chest.I had Chemo (CPT-11 #7)

March 31, Day 470

Mom took me to SCCA.I had Chemo (CPT-11 #6).

March 24, Day 463

Mom took me to SCCA.My neutrophils count was back up to normal range, so I had Chemo (CPT-11 #5).

March 17, Day 456

Mom took me to SCCA.I had an X-ray and saw the doctor.The X-ray showed that the cancer still hasnít spread to any vital organs.The doctorís exam thought that my lymph nodes and patch on my chest seemed smaller, but still too big for radiation to eradicate.The doctor ordered 4 more Chemo and a CT scan on the third week.My neutrophils count was too low, so no Chemo this week.They are hoping my count will build back up with one week off.If not, Iíll be starting daily shots in my tummy.

So much for me having a week off of Chemo.I picked up some tummy bug from the boys and am only able to eat rice for a couple days.

My disability at work needs renewing every 2 months, so I had the forms filled out and sent to them.I have received bills for hundreds of dollars of physical therapy.I sent a letter to SCCA asking why they told me I had unlimited physical therapy and submitted their bills 2 months after the fact.Valley oncology is also confused about what I owe them, so I sent them a letter explaining what I thought I owed them.Of course, they did not respond and keep sending me a bill that I ignore.

March 10, Day 449

Mom took me to Chemo (CPT-11 #4).

March 3, Day 442

Mom took me to Chemo (CPT-11 #3).

February 25, Day 435

Yvonne took me to Chemo (CPT-11 #2).

February 18, Day 428

After blood draw, Mark and I met with Dr. Ellis. The CT scan confirmed that lymph nodes in my right arm pit, chest area, and neck have enlarged most likely due to metastasis. So once again, the doctor is holding off on radiation and switched me to a new chemo called CPT-11. I don't remember what it stands for (Causes Pain and Toxicity #11?). Initial plan is two months of this (one IV per week) before an evaluation of radiation or continue or change to yet another chemo. The doctor doesn't think the radiation people will want to radiate when the cancers are still this size. At least the cancer is still contained to the lymph system and hasn't showed up any place else.

I had a right mammogram that did not show anything.Although they were not able to compare it to last years films, because they are lost.SCCA says they sent them back to Valley and Valley says they never received them.I still have the rash on my left arm.I guess they are not as concerned about my left arm swollenness as they are with the cancer swelling.

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February 11, Day 421

Mom went with me for chemo (MeN 17).I had a CT scan of chest.I had more energy this week, but Iím not sure why.Maybe itís getting more sleep.

February 4, Day 414

Deb went with me for chemo (MeN 16).My non-existent left breast is red and both armpits are hurting some.

I was able to get my work schedule reduced to half-time.Since it is for Medical reasons, none of my benefits are affected and I will receive disability insurance.This is not documented well, but I muddled my way through the red tape.

January 28, Day 407

Sallie went with me for chemo (MeN 15).I have been really exhausted.The Procrit shots are not boosting my blood counts enough.My left arm has developed a rash.The doctor has told me not to wear the sleeve or wrap my arm until the rash has healed.

January 21, Day 400

Deb went with me for chemo (MeN 14).I had a CT scan of chest and neck since I was hurting.Nothing was found but swollen lymph nodes which is probably a virus or bacterial infection.

I went to the massage therapist appointment, but he wasnít there.I left him 2 messages to re-schedule.He left me a message a work that their sleeve seamstress was unable to make it, so he was canceling.Itís just as well.Iím way over my physical therapy limit now that SCCA has finally billed the insurance.

January 20, Day 399

I joined a class at Valley called ďFocus on Healing through movement and danceĒ.I attended about 3 Tuesdays and bought the videotape for home.Seeing all the past treatment women was depressing and too much hugging of strangers for my liking.

January 14, Day 393

Mom went with me for chemo (MeN 13).I complained about my Right arm and armpit hurting.I also talked with nurse about how exhausted and achy I always am.

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January 7, Day 386

Mark and the boys went with me for chemo (MeN 12) and appointment with Dr. Ellis.The boys were out of school due to snow.They were pretty bored with the whole thing.Good thing for game boys.The doctor said that my neck lymph nodes were swollen on both sides, but not any larger than before.She ordered 6 more weeks of chemo and put me on antibiotics.

January 5, Day 384

Appointment with Valley Physical Therapist, Melissa.After only 3 visits, she sent me on my way.She said I was too close to my insurance limit for the year to continue seeing her.I have been playing phone tag with a lymphedema massage therapist.

December 31, Day 379

Deb went with me to chemo (MeN 11).I had a CT scan of my neck.

December 24, Day 372

Mark went with me to chemo (MeN 10).Then we made our way up to LaConner for Christmas. The boys were already at grandma and grandpas.

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December 17, Day 365

One full year since I was diagnosed.

Mark and I visited Dr. Ellis to go over Sue's last CAT scan. It looks like some spots that were on the previous CAT scan have disappeared. But they we're just barely visible last time at the fringe of the machine's resolution. It is good news that they don't show up and are not bigger. So it appears that the chemo is working. The neck tumor feels about grape size now, where it was walnut sized before.The doctor wants to continue with chemo for 3 more weeks and do a CAT scan of the neck.Then, she may start radiation or maybe do more chemo. She'll keep taking the Xeloda during the radiation period, and when radiation is done go back to the full Xeloda/Methotrexate/Navelbine for a while.

Sue also picked up her lymph edema sleeve. The physical therapist isn't happy with the lack of progress in reducing the arm size and softening up the arm and chest tissues. The radiation makes this worse, so she really wants Sue to find someplace for 3-times-a-week lymph massages. Hopefully, this, plus the sleeve, and her daily stretching, will soften things up.

I had chemo (MeN 9)

December 13, Day 358

Mom went with me for chemo (MeN 8).The physical therapist lectured me about not massaging my scar or my lymph system.Mom and I were interviewed during my chemo by a nice young research fellow, Kent, from UW.He is gathering information from cancer patients on ďHow you get the information you wantĒ.After chemo I had my chest CT scan.

December 3, Day 351

Deb went with me for chemo (MeN 7).My range of motion was improved during physical therapy.The dietician checked back with me and had suggestions for raising my calcium level.Who could say no to caramel chews, (Viactiv).

My hair has grown back nicely. I havenít worn a hat in some time.Now the morning choice isnít which hat to wear with my clothes, but which boob (prosthesis) goes with my clothes for the day.

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November 26, Day 344

Karen took me to chemo (MeN 6).It took much longer that expected with Thanksgiving holiday business.My counts were low enough to need a procrit booster shot, but I was one day too late to join a study.We did make it to get my lymph edema compression sleeve fitting.

November 19, Day 337

Mom and dad went with me for chemo (MeN 5).I had physical therapy first, where she told me my insurance was unlimited. I think I met yet another nurse.Iíve also met with the research study person and a dietician.The dietician was very helpful in giving me choices to raise my potassium level.Iíve been taking a potassium supplement, but I am still below normal range.

November 17, Day 335

I am back to work.It seems just like I was here yesterday (Same old, same old).Only 4,641 days until Iím eligible to retire.

November 13, Day 331

Mark and I saw physical therapist, Andrea.She showed us range of motion stretches ( flexion, abduction, external and internal rotation).She took measurements of both arms and the left one is about 2cm larger than the right at each measurement.She also lectured me about resizing my wedding ring.We stopped at Southcenter on our way home to pick up my bras and drop off my ring for re-sizing.

November 12, Day 330

Deb went with me at 1:30 for chemo (MeN 4).We told them I didnít want to be queasy afterwards, so they got me the good stuff (Zofran).Our ulterior motive was that we went and saw the ďMatrix RevolutionĒ at the IMAX afterwards! Once again the nurses pumped my Navelbine IV in twice as fast as recommended.

November 6, Day 324

Mark and I met physical therapist (PT), Andrea.She mostly took a lot of information from us.She examined my scar and measured my left arms range of motion.Then we saw my oncologist Dr, Ellis.She couldnít feel any hard tumors in the neck lymph nodes.It appears that the chemo is working great!She ordered another 6 weeks.She also had signed my ďBack to WorkĒ forms.We had lunch in the Cafťí after we met with the scheduler.

November 5, Day 323

Mom went with me at noon for chemo (MeN 3).I had yet another nurse to meet.We watched the movie ďGhostĒ that luckily we both remembered the end, because I was finished before the movie was over.

I am feeling very well healed from the surgery,the chemo is only causing minor digestive problems,and my disability leave is up on November 15th, so I think Iíll just go back to work.

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November 4, Day 322

I now have a left breast prosthesis.It seems odd that my medical insurance will reimburse Nordstrom.But that was the closer place.I called the experts in Seatlle, but neither place had anything large enough in stock.I selected 2 different bras that Nordstrom seamstresses will add a left pocket in.They also had me get a soft pad to place behind the prosthesis, so it is closer in size to the right side.

I found 2 manufacturers in my web searches that make a size large enough to match my right side.I ordered the nicer looking one from Jodee.One web site also sells items I had never even thought of for men to look more like women.

October 29, Day 317

Deb took me at 3:00 pm for chemo (MeN 2).Deb was not thrilled with the secretive oncology suites or the nurseís ability to use the IV pump.She thought Valley was much nicer.We planned to eat dinner at ďTwo Dagoís from TexasĒ, but upsetting to Deb, they had closed.

October 27, Day 315

Dr. Ingber called to see how I was doing and if there was anything he could do.

October 22, Day 310

I called to talk to Valley oncologist Dr. Ingberís nurse Lori, and she was no longer working there.That might explain why Dr. Ellisís office didnít get much of my chart.It also made the decision to go to SCCS much easier.I left a voicemail for Dr. Ingber that I would be treated at SCCA.I also left a message with Dr. Rinn that I was going to SCCA on her suggestion.

October 21, Day 309

Mark and I went to the Seattle Cancer Care Alliance (SCCA) today. We talked to lots of people (Doctor's assistant, Doctor's nurse, Doctors scheduler, the doctor, the Chemo staff, and more to come), but rather quickly decided to start chemo right then and there. So Sue's now being treated by the SCCA and will probably abandon her previous oncologist. The doctor (Georgiana Ellis) thought the XMeN approach was best. This is slightly different than her study (no "Me" in the study trial), so this will be off study.

The chemos are Xeloda, Methotrexate, and Navelbine so that is where "X-MeN" comes from. Thought the name was cute at least... So today she got a Navelbine IV and then a shot of Methotrexate. These will be repeated weekly. She also got Xeloda which is taken orally every day for two weeks. Then you get a week off of it. We'll do this for up to 3 months if the lymph tumors don't grow or shrink. If they get larger, then itís regroup and try something else.

After 3 months, and with hopefully reduced lymph tumors, then she'll get radiated. After the radiation, then it is probably another 3 months of this chemo to make sure it is all killed.

Overall, I liked the SCCA as they have most everything you need in one building. She even got a flu shot today down on the first floor, and we ate in the cafeteria on the second floor.

Sue thought the SCCA was less personable than where she was in the past, but they seem to deal with a much larger volume of people. They have 45 chemo booths whereas Valley General just expanded from 4 to 9.Some delays occurred because of misplaced paperwork, but to me they seemed more on the ball than Valley. They also said this was kind of anomalous since we weren't originally scheduled for chemo today and we were forced into the schedule.

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October 16, Day 304

Mom took me for a chest and neck CT scan, then a bone marrow MRI of my neck, spine, and pelvis.We stopped at the ATU for them to access my port.They also started an IV.I really didnít need both.The MRI wasnít as bad, since being stuffed in the tube for my neck only took 10 minutes.For the spine and pelvis I was able to go in feet first.

October 14, Day 302

Mark and I saw Valley oncologist, Dr. Ingber.Iím not sure he answered any of my 4 questions, but he wants to be sure and help facilitate whatever treatment I decide.

October 10, Day 298

Mark and I met with Dr. B, radiation oncology, early this morning.He thought going to the UW for their opinions was a good idea.He didnít think I was healed enough do measurements for starting radiation anyway.He said that if the chemo isnít working after 4 weeks, that I should have radiation.We were back home before the boys even went to school.

October 9, Day 297

The fluid in both my drains was down to less that 30cc every 24 hours, so I called surgeon, Dr. Lauís office.Mom and I didnít have to wait too long that afternoon, even though he had no openings.He pulled both tubes out at once, Yikes!Probably was the best way.

October 8, Day 296

Mark took me to my am therapy appointment where she measured both arms in 7 places.The left arm was around 2 cm larger than my right in all the measurements.She gave me a few exercises to do at home and put me to sleep with doís and doníts.They had me make 6 more appointments in the next 2 weeks for massage and wrapping.Once the swelling is down, I can be fitted for a compression sleeve.

We made it to Swedish Cancer Institute by my 1:20 appointment.After a 40 minute wait, we saw Dr Kristine Rinn.She had the final path reports, all the scan reports, and I brought her my films.Her suggestion was to wait on radiation and join a study at the UW for 2 approved chemos that hadnít been taken together before (Xeloda, Capecitabine and Navelbine, Vinorelbine).This is a more systemic approach to killing the cancer.She thought another chest and neck CT scan would be a good starting measurement for checking treatment results.

I spoke to Lori about the MRI results.I do have a brain and there was no cancer in it.The MRI was confusing around my cervical area, so they want me to do neck cervical bone MRI. (YUK).

October 7, Day 295

Mom took me to the lymphadema appointment at 2pm, only to find out that it was tomorrow.Which I know I wouldnít have made it for tomorrow, because thatís when I have the Swedish appointment.So while we re-scheduled, I found out that I had a brain MRI that night.

Mom took me back to Valley MRI at 6:30pm for my brain MRI.Itís not fun being shoved in a noisy MRI tube for 30 minutes.The technician was really nice and able to find a vain for injection.

October 6, Day 294

The boys had a CampFire meeting.In order to make me look more normal, my ingenious son Grady filled a Ziploc bag with air for me to stick in the left side of my shirt.

October 5, Day 295

Mom, Sallie, Sindie, cousins Lori, Amy, Amanda, and Tara participated in the 5 mile ďMaking Strides Against Breast CancerĒ walk in Bellevue.They were members of team ďBig FeatĒ led by Sallieís friend Cory whose sister is a breast cancer survivor.

October 3, Day 291

Mark and I saw surgeon Dr. Lau at 1pm to review the Path report.They also took the bandaging off my incision.I have one large incision from under my arm across my chest with 20 some surgi-strips.The 2 drain hoses are hanging out below my incision.

At 4:30 we got a call from Dr. Ingberís office asking if I knew that I had an appointment at 4:15.I didnít know, but all 4 of us went there to see what he had to say.The boys were not too happy that they had to sit in the waiting room for more than an hour, but the receptionists did give them cookies.

Dr. Ingber reviewed the pathology report with us.He still didnít have a good explanation of why the cancer grew so much while on treatment.As soon as the surgeon okays that I am healed enough, I will start another chemo along with radiation to the neck, armpit, and chest.When the full pathology report is in, he will confer with other oncologists about what chemo to start with.

 

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Pathology Report

*      Invasive ductal carcinoma

*      9/9 for fast growing, grade IV

*      15 x 12 cm tumor in left breast

*      13/13 positive lymph nodes

*      Estrogen negative, progesterone negative

*      HER-2 negative

September 29, Day 286

Mom and Sindie took me for surgery at 8:30am.Dad and Mark arrived before they even called me in.It was surgery time, 10am, and the nurse had given up on starting my IV. The anesthesiologist came out and started my IV.Surgeon, Dr. Lau said it would be an hour if they didnít have to remove my breast.At 11:30 mom realized I must be having the mastectomy.I woke up around 3pm in recovery with a gigantic ACE bandage wrapped around my torso and 2 drains hanging out.

They moved me to room 2108 where Sindie and Mark were waiting.Dr. Lau stopped by to explain what he had done and see how much pain I was in.Not much pain yet, but I was hooked up to a morphine drip if needed.Sindie waited on me until mom and dad came to visit.Then mom waited on me until bedtime.The hospital was understaffed to take care of all the patients that evening.I asked if I could get the IV, filling me full of saline, taken out.They said not until Dr. Lau ordered it in the morning.The night shift nurses seemed much more efficient, probably because most patients were sleeping.They didnít have to wake me up for vitals, because I went to the bathroom every couple hours during the night.

Mark was supposed to arrive at 7am the next morning, but overslept his alarm.Dr. Lau came in at 7:15 and said I could go home as soon as the nurses could release me and someone was there to pick me up.I waited another hour for the nurses to change shifts, then I asked them to unhook and release me.I was home by 10am, where mom and dad were waiting.

When the boys came home on Tuesday, they wanted to know how many stitches I had.I was still wrapped in a big ACE bandage, so I didnít know.

September 24-26, Days 281-283

Bad News Week @#$%^&*†† The PET scan shows activity in my left arm-pit, chest wall, and neck.The MRI shows swollen left arm-pit lymph nodes and thickened breast tissue.My doctors have never seen cancer spread like this before, especially while on the aggressive chemo that I was on.They want to do surgery, because only the lab can tell for sure if it is cancer.Mom joined me for 2 upsetting doctors appointments and Mark for one.The plan is to remove the swollen left lymph nodes and if the quick test shows cancer, then theyíll do a mastectomy of my left breast.I was also able to talk to a breast specialist at Swedish, who agreed we should quickly move forward with surgery. Also trying another anti-biotic, Avelox. †††††

Good News: The mugascan, gate blood pool showed my heart operating at 68% which is better than normal of 60%.Also, there was no suspicious PET activity anywhere else in my body.††

 

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September17, Day274

The PET scan was like being pushed through a lifesaver candy.As soon as my head came through, I could rest my arms from above my head.They played music for me to listen to.

September 16, Day273

To Overlake for Open-MRI at 7:45 am.It took about 2 hours.I felt like a weenie in a giant hamburger bun.It was difficult to lay still that long, but I guess it was practice for tomorrowís PET scan.

September 15, Day272

Stopped by Dr. Ingberís office after picking up prescriptions.My arm-pit was really in pain.They took blood that didnít show any infection.The doctors have no idea why I am in pain.They are just waiting for more test results.

September 11, Day268

Drove to First Hill Seattle for special resolution breast MRI.I could not fit into the tunnel machine, and was back home before the boys went to school.

September 10, Day267

The radiation measurements (tattoos) were checked with a CT scan.

I met with oncologist, Dr. Ingber.The mugascan results were not back yet.The bone scan was the same as prior to chemo.The CT scan was confusing with swollen lymph nodes.So, Dr Ingber postponed my starting radiation and ordered more tests.

September 8, Day265

Radiation oncology for measurements in the am.I made Mark take me, but he wasnít allowed in the room.He had fun working on the lighthouse puzzle in the waiting room, that mom and I started the previous week.It took almost 2 hours to mark me up and determine where to put the tattoos.Iíll have to come back Wednesday, the 10th to check the measurements.That afternoon was the mugascan (heart gated blood pool) test.Technologist Brian told me to come early, yet he didnít inject me until after my appointment time.Mark and I waited the allotted minutes, then Brian put me in the machine.Mark was able to sit with me while the test ran.Brian had a radio with his own music that was competing with the office music system.At least Iím done with these tests?

September 4, Day261

I woke up feeling awful.Luckily mom took me to my CT scan and bone scan.I chugged down the wonderful barium drink for the CT scan, only to throw it up after the test.The first bone scan injection, where she attempted to use my port, spilled all over my clothes, so I had to get another injection and come back that afternoon in different clothes.Mom read the newspaper to me while the machine scanned my body from head to toe.

September 3, Day260

Mom went with me to consult with radiation oncologist Dr. Badiozamani.I also stopped to get my port accessed for tomorrows CT scan.The oncology nurses saw how swollen I was and sent me to get a Doppler test for blood clots.No clots, so continue with another anti-biotic, cefelexin.

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August 28, Day 255

Having pain in armpit again.Taking anti-biotics already for sinuses, Zythromax.

August 20, Day 247

Karen took me at 1:30 pm for my last chemo ( TaxatereT12)The nurses gave me a pink ribbon pin and card signed by most of the staff.Deb joined us for the final rite.

August 13, Day 240

Mom took me at 1:30 pm for chemo ( Taxatere T11).

August 6, Day 233

Sindie took me at 1:30 pm for Doctors appointment and then chemo (Taxatere T10).She got to meet most of the gang in the office.

August 1, Day 228

The boys have been at Grandmas all week going to mulit-sport day camp in Anacortes.I went up Thursday to watch them tubing behind Grandpas boat and then watch camp on Friday.Well, I never got to watch them at camp.I had my seventh bloody nose and we couldnít get it stopped.Dad took me to Island Hospital Emergency Room.They cauterized my nose and gave me a clip for the next time.It turned out to be needed the next morning postponing our early morning drive home.

 

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July 30, Day 226

Deb took me at 1:30 pm for chemo ( Taxatere T9).First day of Medical Disability Leave.

July 23, Day 219

Mark took me at 1:30 pm for chemo ( Taxatere T8).He picked up the boys at 3pm from camp and brought them back to see the last half bottle of my chemo.

July 16, Day 212

Sallie took me at 7:30 am for 9am surgery.Dr. McFall installed a new port on the left side and removed the old port on the right side.I spent several hours sleeping in recovery, mostly because they were really busy.I also slept through my chemo ( Taxatere T7) that afternoon.

June 18 and 25, 2003, Days 184, 191

Chemo Taxatere(T) 5 and T 6 through IV in hand - Deb took me.She stayed to gab and look at Sunset magazines.Weíre also researching medical careers for a friend, Cindy.

No nausea with the Taxatere(T), but there are some other not so wonderful side effects.I feel hyper and hot the day-of and the day-after treatment.Then I have muscle aches, anxiety, dizziness, and fatigue for a few days.The scariest thing has been the nose bleeds.So far I have had 4 of them.If I would stop panicking, they might stop sooner.Iím much calmer when Riley has them.He has also been the one to comfort me through a couple of them.Deb came to my rescue one morning that I had one and was trying to get the boys off to day camp.

June 11, 16, 19, 2003, Days 177, 182, 185

Chemo T 4 through IV in hand, my port would not infuse or aspirate, mom took pictures.

Radiology did a dye study of my port - determined it was broke and leaking under the skin.

Surgeon, Dr. McFall, says that some times ports will break.Scheduled install of new port and removal of old port for morning of July 16.

June 10, Day 176

Rileyís classmate Briana donates a luminary for me at the Tahoma, Maple Valley, Relay for Life.

May 28, June 4, 2003, Day 163, 170

Chemo T2 with mom and T3 with Deb.

 

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May 21, 2003, Day 156

Saw Oncologist who said I was healthy enough to start Taxatere.Got a ride on the Valley shuttle, which was the most dangerous part of the day.Volunteer elderly drivers, on oxygen, like to turn in front of other cars!!

 

Start Chemo Taxatere (T 1) at ATU in Hospital.6 hours later, including a nurse shift change, at almost 9pm the girls picked me up.At least they have a TV, although it was on the man-action TBS channel.

April 30, 2003, Day 135

Chemo AC 4, dreaded last one, but only 4 days of nausea and flu-like aches.

April 9, 2003, Day 114

Chemo AC 3.5 days of nausea and flu-like aches.I was miserable.Now, I have sores in my mouth and a sore throat.They gave me this horrid tasting mouthwash that actually makes my mouth feel better.

A Typical Chemo session

They call me in.I pick a chair.They access my port and draw blood.Start filling me with saline.When blood test is back and close to regular ranges, they order the hard stuff.First they shoot and drip the mixers ( pre-meds Ė 2 different anti-nausea drugs,steroids for countering inflammation of Taxatere).Then the hard stuff, chemo: the Cytoxin and the Taxatere were just long drips.The Adriamycin was a huge syringe that they would administer slowly.Adriamycin is the really hard stuff ( It is red going in, port required to not burn tissue, and itís red coming out).After some more saline to flush, a small shot of hepharin to anti-clog my port, un-hook me, and someone needs to drive me home.This typically take about 2.5 hours.

 

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March 28, 2003, Day 102

My blood counts are taken 10 days after each AC Chemo.This time the Hematacrit was way too low (30, when the low normal range is 40).So they started me on weekly Procrit (Apoetin) shots.Itís amazing how many commercials you notice about drugs once you start taking them.

March 19, 2003, Day 93

ChemoAC 2. 3 days of nausea, same flu-like aches. Is it just the day-after Neulasta shot?

Losing hair in chunks.Tired of leaving a trail of hair, especially in everyoneís food.Had hairdresser Debbie shave my head and trim my wig.

Lengthy head covering discussion

Of course I took to hat shopping like I do most shopping and have purchased at least 16 hats, scarves, and turbans.Debbie got me a pretty pink Kangol beret.Yvonne got me a multi-color flowered brim hat that goes with many colors that I wear (see photo above).Only the Mariners store has large enough caps for me.Deb and I like to have lunch in the Food Court after shopping there.††

I ordered a $40 large wig through the TLC catalog.I stretched it over a soccer ball.Hairdressor Debbie trimmed it to flatter my face.It is hot, ichy, and I have to keep pulling it down from humping on top of my head.I think it shrinks each time I wash it.It is the easiest thing to grab in the morning.Iím sick of trying to match hats with my clothes.

March 7, 2003, Day 81

Woke up to major pain and swelling in armpit.Went to work, but just felt worse.I got an appointment with surgeonís partner for afternoon.†† Went home and took nap.Attempted to tell Dr. Lau that I had felt fine for 2 weeks, but now my armpit was swollen, hot, and in pain.He would not listen or do anything.I went up to oncologist, Dr. Ingberís office.Nurse Lori did blood tests and they put me on anti-biotics.They sent me to the vascular lab, where they made sure I didnít have a blood clot.Luckily, my angels, Mom and Dad were around to comfort me and pick me up.

By Sunday, my armpit had blown out again.Mark went back to packing it regularly.I took the week off from work and just laid around with my arm above my heart.After 4 more weeks, of visits to surgeon, Dr. McFall, and painful to use, it was healed again. I was able to continue my chemo.

I also started having swelling in my hand.This is called lymphodema and common when lymph nodes have been removed.With exercises, minimal use, and a glove, I have been able to defeat that.

 

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February 26, 2003, Day 72

Install port-a-cath and start AC Chemo. Sallie picked me up.I felt okay that afternoon and went to watch boys practice basketball.2 days nausea, Neulasta shot to raise white cells causes many bone aches, feels like flu symptoms.

February 25, 2003, Day 71

Appointment with oncologist, Dr. Ingber who made sure I was healthy enough to start chemo tomorrow.

February 18, 2003, Day 63

My first wig and hat shopping trip with Deb was to a big shop in Federal Way.They had a huge assortment of normal size heads.I tried on the 2 extra-large wigs they had.Deb thought I looked like I should go to a prom in them as they were too small and humped up on my head.They could order me a extra-large male long hair cross-dresser wig for $500.I donít think so.I did find a nice scarf like hat, that I love.And of course we went to lunch at Marie Calendars afterward.I saw Sallieís friend Tracy and her parents, all the way from Mount Vernon, grabbing a bite after a doctors appointment.

 

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February 13, 2003, Day 58

Mark and I met with Dr. Kristine Rinn, Breast Cancer Oncology specialist at Swedish for a second opinion. She recommended the same course of action, although she mentioned some alternate treatment options (you can pick from bad and worse).

February 12, 2003, Day 57

Mark and I met with oncologist, Dr. Ingber and scheduled me to start Chemo after I go on a camping trip next weekend (which was planned a year ago) with my mom and sisters. Attending a remote camp a few days after chemotherapy was not a good plan.

February 5, 7, 2003, Days 50, 52

More tests - Blood tests (Okay, with breast cancer marker at 25 < ), Bone Scan (No cancer Ė just known arthritis in knees and lower back), Heart Scan (Mugascan, Gated Blood Pool); To make sure heart can take the Adriamycin, PET Scan (Unable to do at Seattle Nuclear Medicine); To try UW later.

 

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January 31, 2003, Day 45

Finally. an oncologist appointment after multiple weeks of calling and referral confusion.

Mark and I met with Dr. Ingber at Valley Internal Medicine to discuss treatments.He confirmed what surgeon, Dr. McFall had said they discussed at the Tumor board.It should be treated aggressively to lower the chances it will recur.His top choice for breast cancer is an Adriamycin/Cytoxin chemotherapy regimen.He ordered more tests.

We met his nurse Lori, who is just the sweetest person (As Deana at work had already told me).

January 14, 2003, Day 28

Armpit incision is leaking fluid.Those steri-strips didnít stay attached too well in an armpit.Saw Dr. McFallís surgeon partner, who showed Mark how to pack the wound.This he had to do 2 -3 times per day until it drained less.At school, Grady even drew a picture of Mark poking my armpit with gauze!

I then saw Dr. McFall weekly at the breast center until it healed in 5 more weeks.I got to know nurse Patty and check in with nurse specialist, Sherry.They have been very caring listeners throughout this process.

January 9, 2003, Day 23

CT scan Ė Took forever to get an IV started in my hard to find, rolling veins.There was plenty of nice people there.Results only found 2 small dots on lung, that is probably scars from infections.No suspected metastasis, or spread to other parts of the body.

January 7, 2003, Day 21

Post Op surgery appointment looks good.It could take 2-6 weeks to heal.With the left arm pit sore, I am trying not to use my left arm.††

Pathology Report

*      Invasive ductal carcinoma

*      Grade 1c, 8/9 fast growing

*      1.8 cm tumor in left breast

*      8 negative lymph nodes.

*      Lymphatic invasion present

*      Estrogen negative, progesterone positive

*      HER-2 negative

January 2, 2003, Day 16

Surgery with Dr. McFall Ė wire guided lumpectomy, with sentinel node removal.Mark took me in.After pre-op I was sent to the Breast Center where they used ultrasound to place a wire into the lump, then onto Nuclear medicine for the sentinel node search.This took over 90 minutes, was a little claustrophobic under the scanner machine, but they finallywhisked me back to surgery.There is an incision to remove the lump and an incision to remove lymph nodes from my armpit.Sallie and Sindie were waiting for me in recovery.After I was all unplugged and bodily gratified we went home.

 

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December 19, 2002, Day 2

Mark and I met with surgeon, Dr. Tori McFall at the Valley Breast Center.We also met the breast nurse specialist, Sherry Kuzan, who answered many of our questions.

December 17, 2002, Day 0

It was a very long weekend wondering what the biopsy results would be.At 8 am Tuesday morning, Dr Butler reviews the pathology report with me (invasive ductal carcinoma, small <2 cm tumor, and fast growing).He had made me a to-do list.He had printed a short version and a long version of breast cancer information sheets.He was very nice, but I couldnít stop crying.I went home and tearfully called those who were waiting to hear the results.

It was Tuesday, so I went out with the girls that night.Mark spent the whole night researching breast cancer and knew more than I did when I got home.The boys reacted in their own way.Grady was like ďWell, they need to get that cancer out of youĒ.Which I explained with a small tumor, taking it out is first.Riley was worried that I would die.I just told him most people donít die from breast cancer.Cancer kills when it spreads and takes over organs that you need to live.You donít need boobs to live.

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December 12, 2002, Day -5

Ultrasound guided, needle core biopsy.They numb you, but the vacuum-assisted needle felt like getting your ears pierced each time it took the 6 tissue samples.I was quite bruised and my skin reacted to the tape they covered the wound with.

December 2, 2002, Day -15

It was a 4 hour, long appointment of mammograms, ultrasounds, and magnified mammograms.Irregular solid mass found at 12 oíclock in the left breast.I could not feel it at all.

November 29, 2002, Day -18

I mentioned to my doctor (Dr. Butler) at Valley that I had pain in my armpit.He referred me for a mammogram and ultrasound.Since I had no risk factors or family history of breast cancer, I had planned to get mammograms every-other year.My previous mammogram was in August of 2001.

 

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