Hair Friday, gone Saturday

The first round of chemo did its job on his hair.  He went to work on Friday with a full head of hair and a full beard.  When he came home on Friday night, he mentioned that he kept getting mustache hairs in his mouth.  I tried to pinch a small amount of his beard and it came out in my hand.  We both looked at each other, knowing what was in store for us. 

He took an adhesive lint remover paper and placed it on his face figuring he could remove the really loose ones that way, and that worked nicely so the beard shaving wasn't bad at all!  He then placed one on his sideburn and it got up a bit higher to his temple and out came a huge chunck of hair.  Another look of incredulity!  Now we knew it was time for the head shave.  As luck would have it, he had an appointment with our hair dresser for the next day.

By Saturday at 11:00 am he was clean shaven both on face and head.

Slowly the rest of his hair on his body is coming off, but this is taking longer.  I don't understand how the process works... it doesn't all happen at once, as he is still getting some new hair growth on his head, but it is sporadic and patchy so he needs to keep it shaved.  Same with the beard, though that growth is very very slow.

The mega chemo has begun

Gary had his first round of Bortizemib and completed that a week ago.  Yesterday was the mega day for chemo.  He was at NIH all day got a lovely cocktail of meds in his IV to include taking some home so it would be infused over a 24 hour period.  He has a pump and an IV bag and it goes in his arm through a PICC line.  He has to go back every day and get the bag changed out.  That goes on until Tuesday and then they give him a mega dose of something (can't remember the name now) and it is the one that could make him feel really crappy.  So far, he is doing fine with no side effects.  He was a bit nauseated on the way home from chemo yesterday, but it was probably my driving!  It was rush hour and there was a lot of starting and stopping.  That was it for side effects.  Oh, and he is on a whopping dose of prednisone.  140 mg twice a day for 5 days!  Every 3 weeks, he will get this round of stuff....  Hair should be falling out in a couple of weeks.

I hate this for him... I hate this for him... I hate this for him.

Chemo begins

Am I relieved or am I scared out of my mind?  Today starts the first round of chemo for Gary and I don't know how to feel.  Right now I am feeling a quite numb about it all. 

I hardly slept last night thinking about it and finally got up at 3:45 and got in the shower.  Why stay in bed when my mind just won't shut off? 

We have had a great weekend and a great distraction.  Our dear friends from Mass.  came to visit us.  It has been a huge distraction and for that I am grateful.  We had a Halloween party and friends came over to include our son, his wife and baby.  It was excellent!  Gary's friend helped him in the basement, getting it framed so we can finally get walls up.  That is huge.

We will leave for the hospital in about an hour.

Well meaning 'friends'

Tell me why it is when someone hears your story about cancer that they feel they must share every terrible thing that they know about it and then tell me how someone they know had some form of cancer and suffered terribly and died???  Why do they think I want to hear this?  Don't they know that I am just coming to grips with it myself and hearing the 'worst case scenario' is not being helpful?  I just nod my head and listen, but inside I am going I just can't stand to hear you talk!

Chemo begins this Friday.  Clinical Trial up at the NIH Cancer Institute in Bethesda, MD.

We are on an emotional roller coaster and I have to stop crying and start being supportive and strong.  When will that happen?

My daughter my confidant

My daughter, Tammie, has been there for me since the beginning.  She knows and has known for a while.  When I couldn't talk to anyone, I talked to Tammie.  She has been such a huge help with all of this.  She is so sad, but wants to talk to me, and for that I am so pleased.  I am so lucky to have such a wonderful person in my life.

The diagnosis

I feel like my heart has been wrenched out of my chest. The doctor calmly told my husband, "You have stage 4 Mantle Cell Lymphoma". How do you deal with that? How do you stop the frustration and anger?

We have been walking around like zombies this week both in our own private thoughts. When we talk, it turns to tears.

We both play mindless games on the computer to distract ourselves from the inevitable. There is only so much you can talk and think about. Your mind has to take a break! I want to forget, but I look at him and it comes flooding back. The love of my life is terribly ill.

How did it happen, and why? Why does he still look so healthy and strong? If he hadn't had that blood test, we never would have known.

telling

We told our son and his wife two nights ago. We wanted to wait until after this Saturday, after the baby's baptism, so I emailed my son and asked if we could meet on Sunday. He knew something was wrong and didn't want to wait and asked if we could get together on Wednesday evening. We decided on a restaurant, but the more I thought about it, the more I knew that telling someone bad news at a restaurant was not a good plan. I asked if we could meet at their home and they were in agreement.

They took the news as well as anyone could. It was good to have the distraction of their 6 month old baby. I guess after we left, there were a lot of tears that were shed.

There are still many tears shed here. We found out yesterday that it is definitely a type of B-cell lymphoma, and which one is too hard to call at this point. Gary thinks he is in stage 3, and why he feels that, I don't know.

I called my brother yesterday and told him. His wife has cancer and he was very understanding about it.

We told our close friends, Diane and Bill last night and they took it okay. They said they loved us and would do anything to help. Bill says he just feels he is a match for a bone marrow biopsy... let's hope it doesn't get to that.

Still no diagnosis

Waiting, waiting and more waiting. We just want the definitive diagnosis so we can get the treatment started. Everything is leaning towards a lymphoma, most likely Mantle Cell Lymphoma. Not a good one.

Friday was the bone marrow biopsy and it was quite painful for him. More bloodwork, a CT scan, 24 hour urine. He has been through it. Now Monday it is and Endoscopy and Colonoscopy. I am taking off work so I can drive him back from the hospital.

I went away for the weekend last weekend with a group of women from my book club to Smith Mountain Lake. I did not want to go.. at all. Gary insisted that I do. It was nice, but I never could completely relax and was always thinking about him. I came home on Sunday morning and he hadn't showered the whole weekend and never combed his hair. He was a walking zombie. I hate that I went away. He cried in my arms and said 'I wanted to grow old with you!'

He and I are telling our son and his wife tonight.
I hate this.

Inconclusive results

No bone marrow biopsy last Friday as the doctor wanted more bloodwork done to help determine if it really was CLL. After waiting several days, we finally received the call from the doctor yesterday (Tuesday) stating that they could not determine what it is, whether a lymphoma or a leukemia. He will have that on Friday.

Until that phone call came last night, my stomach was tied up in knots... I even felt sick to my stomach. I wish we knew so we could get the treatment started. This limbo is driving me crazy.

Bandaid

Yesterday was a day of mixed emotions. He cried in my arms in the middle of the day and I held him and let him cry... I cried too. Life is just so unfair.

We are staying busy. Last night our friends invited us over to their house for dinner with their out of town Australian visitors and our friend's family. It was wonderful and for 4 hours our sadness was temporarily replaced with fun and laughter. It was greatly needed! I kept checking out Gary and he was having a good time.

Today we are going with the same group and taking a bus to the vineyards to a couple of wineries. That should be a great time. Being with friends is a huge bandaid.

Day one

Or is it day two or which day is it? How do I cope with so much grief, how can I support my husband when I am grieving so much for him? Do I let him see my pain? Do I push that aside and show him I am strong?



He has Parkinsons and was diagnosed 3 years ago and if that is not enough, the doctor now thinks he has CLL, Chronic Lymphocytic Leukemia. His blood levels are way off. He was to go in yesterday for a bone marrow, but the night before his doctor called the house, I answered. She said, "I think we will postpone the bone marrow for a while", he needs to come in for more blood work, his last bloodwork is very suspicious for CLL." I calmly said that she needed to call him at work and gave her his number. After I hung up, I screamed and wailed... no it cannot be!



She should not have told me this presumptive diagnosis, where is patient confidentiality? But she did and I need to move on from that. I phoned my husband and asked if the doctor called. He said that he heard from her and that he should come in Friday for more bloodwork. She would have a copy of his bloodwork waiting for him from this past Tuesday. He remained pretty calm about it all on Thursday night, stating that it probably was from all of his meds he is on that is causing such a flucuation.



We went in for his bloodwork on Friday morning. He saw the paperwork and talked to the doctor. We both saw from the look on her face that she was pretty sure that is what it was. She said that the bone marrow and CT scan will help in staging his illness. We left the hospital and Gary was despondant... he said from reading the lab results (he is a doctor), he is pretty sure that he does have CLL. He is quiet, withdrawn and emotional all rolled into one.

He will probably get the definitive diagnosis on Monday. We are not just sitting and waiting for this, I am encouraging him to be active. We went to the movies yesterday and saw Julie and Julia and it was great and lighthearted. I had a lump in my throat the entire time the movie was playing and cried through a good portion of it. I know he did not see me, at least I hope that he did not.

Tonight we go to a friend's house for dinner and tomorrow on a wine tour. He will not say anything to anyone... and neither will I. We will make the best we can of this situation this weekend. A day at a time is all we can do.